Podcasts about participatory medicine

In this episode, Amy sits down with Ted Talk speaker, blogger, and activist, Dave deBronkhart. They delve into Dave's extraordinary journey of surviving stage 4 cancer and how his proactive approach in healthcare led to his survival and empowerment advocacy. Amy, who lives with cystic fibrosis, shares how Dave's work inspired her to take agency over her health. Together, they discuss the importance of patient empowerment, collaboration between patients and healthcare providers, and defining personal abundance beyond material success.  Tune in to learn how Dave is actively changing the culture of healthcare, creating an inspiring  patient-doctor partnership. More about Dave: Dave deBronkart, known on the internet as e-Patient Dave, is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world's leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. An accomplished speaker in his professional life before cancer, he is today the best-known spokesman for the patient engagement movement, attending over 650 conferences and policy meetings in 26 countries, including testifying in Washington for patient access to the medical record under Meaningful Use. A co-founder and chair emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Patient Experience Journal,  iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he's appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice. Dave's TED Talk Let Patients Help went viral, and for years was in the top half of the most viewed TED Talks of all time with over a half million views; volunteers have added subtitles in 26 languages, indicating the global appeal of his message. In 2012 the National Library of Medicine announced that it's capturing his blog in its History of Medicine Division, and he was the Mayo Clinic's 2015 Visiting Professor in Internal Medicine. Connect with Dave: https://www.epatientdave.com/ https://www.ted.com/talks/dave_debronkart_meet_e_patient_dave Connect with Amy Sylvis: ⁠https://www.linkedin.com/in/amysylvis Contact Us: https://www.sylviscapital.com https://www.sylviscapital.com/webinar

In this episode of the MindHealth360 Show, we explore the future of healthcare with James Maskell, a pioneering advocate for functional and integrative medicine, author of “The Evolution of Medicine” and “The Community Cure” (check titles), and founder of the largest global network of functional medicine educational and practitioner groups, the  “Functional Forum”. Mr. Maskell discusses the growing burden of chronic diseases, the limitations of conventional medicine and how functional medicine addresses the root causes of illness, as well as the importance of community based care for healing. Mr. Maskell has been at the forefront of efforts to make functional medicine more accessible and effective at scale. The conversation covers the development of community-based healthcare models, such as group medical visits, which combine the power of social connection with medical care. Mr. Maskell explains how these models can enhance patient outcomes, reduce healthcare costs, and address psychosocial factors that contribute to chronic disease. He emphasises the need for a shift toward participatory and preventive healthcare, where patients are active participants in their health journey. In this episode, you'll learn about: - The Role of Functional Medicine in Chronic Disease Management: explore how functional medicine's root cause approach can reverse chronic diseases by focusing on personalised care, and lifestyle interventions while simultaneously addressing underlying physiological imbalances. - Innovative Group Medical Visits: learn about the implementation and effectiveness of group medical visits in functional medicine. These visits not only address the medical needs of patients but also provide social support, which is crucial for improving outcomes in chronic illness and mental health. - Health Economics and Functional Medicine: understand the financial implications of adopting functional medicine in healthcare systems. Mr. Maskell discusses how functional medicine can lead to significant cost savings by reducing the need for chronic disease management through medications and frequent hospitalisations. - Psychosocial and Psychospiritual Factors in Healthcare: mr. Maskell highlights the importance of addressing psychosocial determinants of health, such as loneliness and stress, which are often overlooked in traditional medicine but are critical for effective chronic disease management. - Integration of Functional Medicine into Mainstream Healthcare: discover the challenges and opportunities in bringing functional medicine into mainstream healthcare systems, including overcoming resistance from traditional medical practices and the pharmaceutical industry. - The Impact of Community in Healthcare: mr. Maskell's work demonstrates how community-based approaches can enhance patient engagement, adherence to treatment plans, and overall well-being, particularly in managing complex, chronic conditions. - The Future of Functional Medicine: insights into how technology and data-driven approaches are being integrated into functional medicine to improve diagnostic accuracy, treatment personalisation and scalability of care models. Guest's Social Media Channels: - Website: https://www.jamesmaskell.com/ - Instagram: @mrjamesmaskell -LinkedIn: https://www.linkedin.com/in/jamesmaskell/ Publications: - Maskell, J. (2014). The Evolution of Medicine: Join the Movement to Solve Chronic Disease and Fall Back in Love with Medicine - Maskell, J. (2019). The Community Cure: Transforming Health Outcomes Together  

Publications such as the New England Psychologist serve as invaluable resources, providing updates on state psychological association changes and offering insightful analysis to help clinical practitioners understand the implications for their practice. In this episode, Sharlee Dixon speaks with Dr. John Grohol. John is the publisher of the New England Psychologist, a 32-year-old quarterly trade publication for clinical psychologists in the New England region. John has played a transformative role in making mental health resources accessible on the internet. In 1995 he founded Psych Central, the WebMD of mental health online, where he was also its CEO, Editor-in-chief, and a regular contributor. He sold Psych Central in 2020 to Healthline. In 1999, he joined the first online therapy company in Boston, Help Horizons, as the youngest chief operating officer in the industry. He oversaw that company's successful sale in 2006. In 2001, John created one of the first online mental health support groups, MySupportForums, which is still run today by John and a team of volunteers. He's both a published book author and researcher. John is also one of the co-founders of the Society for Participatory Medicine, a non-profit that seeks to help patients become equal partners in their healthcare decisions. I'm excited to have John with us today to discuss the importance of independent journalism and his work with the New England Psychologist.   To learn more about the New England Psychologist, please visit: https://www.nepsy.com If you would like to learn more about NEPsy's Classified Advertising, please visit: https://www.nepsy.com/classifieds/ To learn more about Dr. John Grohol, please visit: https://grohol.com/john-grohol/

Knowledge is power.So how can we ensure our healthcare system is empowering patients?This episode is a brilliant chat with ‘e-Patient Dave' deBronkart, a legendary advocate of participatory medicine who came into the spotlight during a battle with cancer in 2007.Dave is the living embodiment of participatory medicine, and reflects passionately on numerous inspiring examples of patient-led change: Long Covid, Parkinson's Disease, Marfan Syndrome… the list goes on.Sharing candidly on his own health battle and the preventable death of his mother due to staff shortages at a care home, it's clear Dave has always been dedicated to giving as much to life as he can. Our healthcare system is broken, the establishment is stubborn to change, but patient power will never let up - we can always take matters into our own hands!Follow me on Instagram and Facebook @ericfethkemd and checkout my website at www.EricFethkeMD.com. My brand new book, The Privilege of Caring, is out now on Amazon! https://www.amazon.com/dp/B0CP6H6QN4

How do you change behavior in people who have lived in a system where healthcare is built on the idea of being sick?In this episode, co-founder and executive director of Hands on Peru, Katie Baric, steps into the spotlight to share her story from growing up in North Carolina to bringing a positive public health change to Peruvian communities. We speak about her organization's shift in healthcare perspective, moving from a reactive to a proactive stance, the concept of participatory healthcare, and the birth of Chimuk, an ethical fashion line that is redefining community empowerment.Check out the shownotes to learn more!__________________Thank you to our partners at CHIMUK: A sustainable and ethical handmade fashion brand transforming women's lives through knitting. Purchase one of a kind, high quality baby alpaca, and cotton handmade scarves, hats, and more! Each product comes with a special QR code linking you to a photo/bio of the artisan who handmade your product! Click here to see the impact you can make by shopping with Chimuk. >>Use the code GHP10 for 10% off at checkout!

Doug Lindsay has spent the last two decades investigating and tackling rare, complicated medical conditions – first in himself and his family and now through his Personal Medical Consultant service. An innovator, Doug partners with clients and experts to make new things happen. He works to get clients who are stuck in the medical system unstuck. To aid him in his work, he strives to understand healthcare from all levels of organization, from the individual to health systems, public health, and global health. Doug's dogged, indefatigable ability to chase down answers to an individual's complex problems makes him a special asset as a teammate and Personal Medical Consultant. In addition to his Personal Medical Consultant service, Doug Lindsay • Co-chairs PCORI's Congressionally-mandated Rare Disease Advisory Panel (RDAP) • Co-chairs Washington University School of Medicine's Community Advisory Board for the Institute for Clinical and Translational Sciences and the Institute for Public Health (ICTS & IPH). • Is Community Advisory Board member for the National Institutes of Health's ACTIV-1 IM trial. (ACTIV is the US government's public/private/nonprofit collaboration for Accelerating COVID-19 Therapeutics and Vaccines research.) • Is member of the National Institutes of Health's ten-person ACTIV COVID Biospecimen Prioritization Committee. (NIH) • Is member of Academy Health's Global Health Interest Group. • TEDx talk Operation: Adrenal Gland can be found at TED.com • Was speaker in the panel kicking off Academy Health's Datapalooza, 2019 • Has twice been an ePatient Scholar at Stanford Medicine X (2017, 2019) • Appeared on The Dr. OZ Show in fall 2019 as example of The Power of 1 (to make a difference). • Was the first patient invited to give a fireside chat for the Health Management Academy, which hosts C-Suite education conferences for the nation's 100 biggest hospital systems, 2017. • Co-chaired aviation humanitarian nonprofit Wings of Hope's “Taste of Hope” fundraiser • Has been keynote speaker for national organizations like AHIMA, for healthcare conferences like the Society for Participatory Medicine, and at internal corporate events for firms like Pfizer. • Graduated with honors from Rockhurst University's Honors College with a BS in biology in 2016. • CNN online feature “This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself” on his story was the #3 article globally across all media platforms for all of 2019 for time readers spent reading it.

On this episode of the podcast, I was joined by Jane Sarasohn Kahn of Health Populi and THINK-Health. Jane and I discuss: - US Healthcare System - Healthcare economics before Healthcare economics - Her Book: Health Consuming - Health Consuming vs. Health Citizenship - US vs. European Healthcare systems Jane is a health economist, advisor and trend-weaver to organizations at the intersection of health, technology and people. Jane founded THINK-Health after working with health care consultancies in the US and Europe. Jane's clients span the health/care ecosystem: technology, pharma and life sciences, providers, plans, financial services and consumer goods. She founded the Health Populi blog in 2007. Jane advises on strategy via environmental analysis, scenario and strategic planning. She is on the advisory boards of CanSurround, CAQH's U.S. Health Efficiency Index, the Health 2.0 Conference, healthBank, HIMSS Connected Health Committee, the Society for Participatory Medicine, Stupid Cancer, and WEGO Health. In her community of Phoenixville, PA, Jane sits on the Board of The Clinic, a free clinic for residents. Jane is a frequent speaker, listed with AHA's Speakers Express and Executive Speakers Bureau.

We're discussing the Magic of Physician-Patient Collaboration with Dr. Danny Sands! In this episode of Faisel & Friends, we're covering Physicians as Magicians, taking better care with information technology, and empowering patients through participation.Co-founder of the Society for Participatory Medicine and CMO, Diameter Health - https://www.wbur.org/news/2018/01/12/participatory-medicineBeing a doctor is your calling because you couldn't imagine doing anything else. Let's talk about your career goals in medicine. Connect with us and tell us how you dream of practicing medicine. Want to learn more about how we do healthcare? Visit our resource center and check out how we are transforming healthcare. Don't forget to subscribe to ChenMed Rx to receive the latest news and articles from ChenMed.

This week on PopHealth Week Fred and Gregg chat with Amy Price PhD, a Stanford, Senior Research Scientist, Anesthesia Informatics and Media Lab. Dr. Price's background is in international relief work, clinical neuro--cognitive rehabilitation, and includes service on the boards of multiple patient organizations. As a trauma survivor she's developed a flexible mindset to relate to all stakeholders and cultures. This week's episode we discuss the patient's voice in reseach, product development, the human experience and how vulnerabilty is a gateway to healing and progress.

 Did you know? According to a report published by the WHO, adherence rates in developed countries average only about 50%, and there is little data about adherence in countries where access to care is more limited or consistent. Adherence is a key factor associated with the effectiveness of all pharmacological therapies but is particularly critical for medications prescribed for chronic conditions. Of all medication-related hospitalizations that occur in the United States, between one-third and two-thirds are the result of poor medication adherence. Inadequate adherence also is a major player in adverse events to medications. Welcome to this episode of Physician's Weekly Podcast. My name is Dr Rachel Giles, from Medicom Medical Publishers, in collaboration with Physician's Weekly. We have 3 fantastic in-depth interviews for you this week, touching on improved hospital workflow for stroke patients, a presentation on management of gout in dialysis patients, and medication experience. In this 31st episode of the Physician's Weekly Podcast, we speak with Dr Danny Sands, about addressing barriers such as understanding their condition, cultural issues, and denial can help patients avoid adverse effects from poor medication adherence. Dr Sands is a primary care physician at Beth Israel Deaconess Medical Center, and is a founder and co-chair of the board of the Society for Participatory Medicine. In 2009 he was recognized by HealthLeaders Magazine as one of “20 People Who Make Healthcare Better.”Also in this episode, we speak with Dr Anthony Bleyer, Professor of nephrology at the Wake Forest School of Medicine, North Carolina, about his presentation of the results of a cohort study into the prevalence, risk factors and outcomes of gout in dialysis patients at the Kidney Week of the American Society of Nephrology, which was held virtually 4-7 November, 2021 [1].But first, Physician's Weekly speaks with Ferdinand Hui, about workflow optimization and mobile technology. Dr. Hui hails from Johns Hopkins – but is currently working in Hawaii- and we talk about the deluge of communication apps in hospitals and what makes something valuable, versus noise. He recently published a paper in Journal of Neurointerventional Surgery [2] on the impact of mobile apps on treatment times for patients with stroke where time is of the essence. His team showed that that utilization of RapidAI mobile application can significantly reduce treatment times in stroke care by accelerating the process of mobilizing stroke clinicians and interventionalists.Enjoy listening!Further reading:1.      Bleyer AJ, et al. Risk Factors and Outcomes of Gout in Dialysis Patients: A Cohort Study of the United States Renal Data System (USRDS). PO0792, American Society of Nephrology: Kidney Week 2021, 04-07 November.2.      Murray NM, Unberath M, Hager GD, Hui FK. Artificial intelligence to diagnose ischemic stroke and identify large vessel occlusions: a systematic review. J Neurointerv Surg. 2020 Feb;12(2):156-1Let us know what you thought of this week's episode on Twitter: @physicianswkly Want to share your medical expertise, research, or unique experience in medicine on the PW podcast? Email us at editorial@physweekly.com! Thanks for listening!

Patients are humans. The digital health landscape is constantly evolving, and there is a lot of opportunity for the US healthcare system to better utilize tools and data to improve the patient experience by viewing them as human beings with individual needs and values. In today's episode, we're looking at the intersection of healthcare and experience with Jan Oldenburg of Participatory Health Consulting. Tune in to hear how we can start doing better by patients.   In This Episode:   [01:30] Introducing Jan and her role at Participatory Health Consulting. [09:34] The complexities of the healthcare system and social environment in the US. [14:58] The impact of Covid-19 and how quickly the healthcare system can change. [24:45] The untapped potential of using data for individualized care and tools that are helping get to specific why's effectively at scale. [30:52] Why both the physical and the digital environments have to cohere. [35:41] Aransas and Dave's main takeaways for experience strategists.   Key Takeaways:   Participatory health is health care that takes advantage of the individual and respects that person and their decision-making and engagement in the process. Social determinants of health, such as social and physical environment, community, and broadband capabilities, all significantly impact your ability to be healthy.  Your zip code is the thing that can most tell how healthy you're likely to be because it reflects all of the societal components that affect your health. Generalized education doesn't work. It's crucial to individualize the patient experience and deeply understand their journeys, needs, values, and what motivates them to drive cost down for the whole system and drive efficacy up.   Bio:    Jan Oldenburg, FHIMSS, is the principal in Participatory Health Consulting. She advises and mentors healthcare organizations about the evolving digital health landscape.    Ms. Oldenburg has focused on digital transformation in healthcare for 20 years. Her experience includes leadership roles in several advisory firms, including EY. She has worked for and advised organizations in all areas of healthcare: payers, providers, medical device manufacturers and software vendors. She served as the Vice President of Patient and Physician Engagement in Aetna's ACO organization and held senior leadership roles in Kaiser Permanente's Digital Services Group and at HealthPartners. Selected consulting clients include: UnitedHealth Group, Philips Healthcare, CareCredit, MedRespond, Synergiq, Healthfully, Spectrum Enterprise, Baxter Regional Health System and others.    Ms. Oldenburg is the principal editor of both Participatory Healthcare: A Person-Centered Approach to Transforming Healthcare published 2016 and Engage! Transforming Healthcare Through Digital Patient Engagement, published in 2013. Ms. Oldenburg also authored chapters in the Third and Fourth Editions of Medical Informatics and The Journey Never Ends. She's a board member of the Society for Participatory Medicine, co-chair of the HL7 Patient Contributed Data workgroup, and the former co-chair of the HIMSS Connected Health Committee. Ms. Oldenburg is also a member of the Patient Advocacy & Ethics Group for the Datavant COVID-19 Research Database. She tweets @janoldenburg.     Links Mentioned:   http://janoldenburg.com   Twitter @JanOldenburg

Since the early 2000s, Dr. Danny Sands and his patient, Dave deBronkart have been working collaboratively on Dave's care - breaking boundaries of the old standard of care and communication between doctor and patient.  Together they co-founded the Society for Participatory Medicine. Dr. Sands is an Assistant Professor of Medicine at The Harvard Medical School, and practices primary care at Beth Israel Deaconess Medical Center.  Decades ago, he started emailing with his patients, and has since innovated many tools to help his patients get the best care - firm in his belief that working together benefits both patient and provider.  Dave deBronkart, also known as “e-patient Dave,” is an advocate for participatory medicine, and cancer survivor. Years before his own kidney cancer diagnosis, he wanted to be an engaged and informed participant in his medical care. He sought out a similar-minded doctor and that's how he met like-minded ally, Dr. Danny Sands. Check out their interview to hear their story, learn about Dave's cancer journey, and how together he and Dr. Sands created the Society for Participatory Medicine.  Connect with Dr. Sands: https://www.linkedin.com/in/drdannysands/  Connect with Dave deBronkart: https://www.linkedin.com/in/epatientdave/  Learn more about the Society for Participatory Medicine: https://participatorymedicine.org/manifesto/  See Dr. Danny and Dave Sing - around the 55 minute mark https://www.epatientdave.com/2019/06/19/nehimss-2019-teaching-patient-clinician-partnership-with-role-play-and-a-song/  Topical time codes: 1:01 - About Dave and Dr. Sands  6:15 - Working with Dr. Sands collaboratively 11:32 - Connecting with patients 16:00 - Dave's kidney cancer diagnosis and online support 22:58 - Society for Participatory Medicine  27:07 - Culture change in healthcare  37:36 - Society for Participatory Medicine Manifesto

Today we bring you the second half of Harry's conversation with Dave deBronkart, better known as E-Patient Dave for all the work he's done to help empower patients to be more involved in their own healthcare. If you missed Part 1 of our interview with Dave, we recommend that you check that out before listening to this one. In that part, we talked about how Dave's own brush with cancer in 2007 turned him from a regular patient into a kind of super-patient, doing the kind of research to find the medication that ultimately saved his life. And we heard from Dave how the healthcare system in the late 2000s was completely unprepared to help consumers like him who want to access and understand their own data.Today in Part 2, we'll talk about how all of that is gradually changing, and why new technologies and standards have the potential to open up a new era of participatory medicine – if, that is, patients are willing to do a little more work to understand their health data, if innovators can get better access to that data, and if doctors are willing to create a partnership with the patients over the process of diagnosis and treatment.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.Full TranscriptHarry Glorikian: Hello. I'm Harry Glorikian.Welcome to The Harry Glorikian Show, the interview podcast that explores how technology is changing everything we know about healthcare.Artificial intelligence.Big data.Predictive analytics.In fields like these, breakthroughs are happening much faster than most people realize. If you want to be proactive about your own healthcare and the healthcare of your loved ones, you'll need to some of these new tips and techniques of how medicine is changing and how you can take advantage of all the new options.Explaining this approaching world is the mission of the new book I have coming out soon, The Future You. And it's also our theme here on the show, where we'll bring you conversations with the innovators, caregivers, and patient advocates who are transforming the healthcare system and working to push it in positive directions.In the previous episode we met Dave deBronkart, better known as E-Patient Dave for all the work he's done to help empower patients to be more involved in their own healthcare. If you missed it, I'm gonna recommend that you listen to the first discussion, and then come back here.We talked about how Dave's own brush with cancer in 2007 turned him from a regular patient into a kind of super-patient, doing the kind of research to find the medication that ultimately saved his life. And we heard from Dave how the healthcare system in the late 2000s was completely unprepared to help consumers like him who want to access and understand their own data.Today in Part 2, we'll talk about how all of that is gradually changing, and why new technologies and standards have the potential to open up a new era of participatory medicine – if, that is, patients are willing to do a little more work to understand their health data, if innovators can get better access to that data, and if doctors are willing to create a partnership with the patients over the process of diagnosis and treatment.We'll pick up the conversation at a spot where we were talking about that control and the different forms it's taken over the years.Harry Glorikian: You've observed like that there's some that there's this kind of inversion going on right now where for centuries doctors had sole control over patient data and sole claims to knowledge and authority about how patients should be treated. But now patients may have more detailed, more relevant and more up to date data than your doctors does. Right. You've talked about this as a Kuhnian paradigm shift, if I remember correctly, where patients are the anomalies, helping to tear down an old paradigm, you know. Walk us through the history here. What was the old paradigm and what's the new paradigm and what are you some of your favorite examples of this paradigm shift?Dave deBronkart: Well, so I want to be clear here. I have the deepest admiration for doctors, for physicians and for licensed practitioners at all levels for the training that they went through. I don't blame any of this on any of them. I did a fair amount of study about what paradigms are Thomas Kuhn's epic book The Structure of Scientific Revolutions, like discovering that the Earth isn't the center of the solar system and things like that. The paradigm is an agreement in a scientific field about how things work. And it is the platform, the theoretical model on which all research and further study is done. And these anomalies arise when scientists operating in the field keep finding outcomes that disagree with what the paradigm says. So in the case of the planets circling the earth and the how the solar system works. They discovered that Mars and other planets all of a sudden would stop orbiting and when they would do a little loop de loop. I mean, that's what they observed. And they came up with more and more tortured explanations until finally, finally, somebody said, hey, guess what? We're all orbiting the sun. Now, the paradigm inn health care has been that the physician has important knowledge. Lord knows that's true. The physician has important knowledge and the patient doesn't and can't. Therefore, patient should do as they're told, so called compliance, and should not interfere with the doctors doing their work. Well, now along comes things like all of those things that I mentioned that the patient community told me at the beginning of my cancer. None of that is in the scientific literature. Even here, 15 years later, none of it's in the literature. What's going on here? Here's that first clunk in the paradigm. Right. And we have numerous cases of patients who assisted with the diagnosis. Patients who invented their own treatment. And the shift, the improvement in the paradigm that we have to, where just any scientific thinker -- and if you want to be a doctor and you don't want to be a scientific thinker, then please go away -- any scientific thinker has to accept is that it's now real and legitimate that the patient can be an active person in healthcare.Dave deBronkart: Yeah, I mean, you've said you don't have to be a scientist or a doctor anymore to create a better way to manage a condition. So, I mean, it's interesting, right? Because I always think that my doctor and I are partners in this together.Dave deBronkart: Good participatory medicine. Perfect.Harry Glorikian: You know, he has knowledge in certain places I definitely don't. But there are things where him and I, you know, do talk about things that were like, you know, we need to look into that further. Now, I'm lucky I've got a curious doctor. I found somebody that I can partner with and that I can think about my own health care in a sort of different way. But I mean, sometimes he doesn't have all the answers and we have to go search out something. You know, I was asking him some questions about HRV the other day that, you know, he's like, huh, let me let me ask a few cardiologists, you know, to get some input on this. So do you see that, I mean, I see that as the most desired outcome, where a patient can have their record. They're not expected to go and become a physician at that level of depth, but that the physicians who also have the record can work in a participatory way with the patient and get to a better outcome.Dave deBronkart: Exactly. And the other thing that's happened is and I've only recently in the last year come to realize we are at the end of a century that is unique in the history of humanity until science got to a certain point in the late 1800s, most doctors, as caring as they were, had no knowledge of what was going wrong in the body with different diseases. And then and that began a period of many decades where doctors really did know important things that patients had no access to. But that era has ended. All right, we now have more information coming out every day than anyone can be expected to keep up with. And we now are at a point also where we've seen stories for decades of patients who were kept alive. But at what cost? Right. Well, and we now we are now entering the point where the definition of best care cannot be made without involving the patient and their priorities. So this is the new world we're evolving into, like and Dr. Sands wears a button in clinic that says what matters to you?Harry Glorikian: So I mean, one of the other, based on where you're going with this, I think is you know, there are some movements that have been arising over the years. I don't know, maybe you could talk about one of them, which is OpenAPS. It's an unregulated, open source project to build an artificial pancreas to help people with type 1 diabetes. And I think it was Erich von Hippel's work on patient driven innovation. I talk in my book about, and I ask whether we should be training people to be better patients in the era of, say, A.I. and other technologies. What do you think could be done better to equip the average patient with to demand access to patient data, ask their doctors more important questions, get answers in plain English. You know, be more collaborative. What do you think is going to move us in that direction faster or more efficiently, let's say?Dave deBronkart: Well, I want to be careful about the word better, because I'm very clear that my preferences are not everyone's preferences. Really, you know, autonomy means every person gets to define their own priorities. And another thing is one of the big pushbacks from the hospital industry over the last 10 years as medical records, computers were shoved down their throats along with the mandate that they have to let patients see their data in the patient portal was a complaint that most patients aren't interested. Well, indeed, you know, I've got sorry news for you. You know, when I worked in the graphic arts industry, I worked in marketing, people don't change behavior or start doing something new until they've got a problem. If it's fun or sexy, you know, then they'll change, they'll start doing something new. What we need to do is make it available to people. And then when needs arise, that gets somebody's attention and they're like, holy crap, what's happening to my kid? Right. If they know that they can be involved, then they can start to take action. They can learn how to take action. It's having the infrastructure available, having the app ecosystem start to grow, and then just having plain old awareness. Who knows? Maybe someday there will be a big Hollywood movie where people where people learn about stories like that and. You know, from that I mean that I think nature will take its course.Harry Glorikian: Well, it's interesting because I recently interviewed a gentleman by the name of Matthew Might. He's a computer scientist who became a surrogate patient advocate for his son, Bertrand, who had a rare and undiagnosed genetic disorder that left him without an enzyme that breaks down junk protein in the cells. But he, you know, jumped in there. He did his own research found in over-the-counter drug, Prevacid of all drugs., that could help with Bertrand's deficiency. But, I mean, Dave, you know, Matt is a, he was a high-powered computer scientist who wasn't afraid to jump in and bathe in that, you know. Is that the type of person we need? Is that a cautionary tale, or an inspiring tale? How do you think about that?Dave deBronkart: Desperate people will bring whatever they have to the situation. And this is no different from, you know, there have been very ordinary people who had saved lives at a car crash because they got training about how to on how to stop bleeding as a Boy Scout. You know, it is a mental trap to say, "But you're different." Ok. Some people said, "Well, Dave, you're an MIT graduate, my patients aren't like you." And people say, well, yeah, but Matt Might is a brilliant PhD type guy. What you mentioned few minutes before gives the lie to all of that, the OpenAPS community. All right, now, these are people you need to know appreciate the open apps world. You need to realize that a person with type 1 diabetes can die in their sleep any particular night. You know, they can even have an alarm, even if they have a digital device connected with an alarm, their blood sugar can crash so bad that they can't even hear the alarm. And so and they got tired of waiting the industry. Year after year after year, another five years will have an artificial pancreas, another five years, and a hashtag started: #WeAreNotWaiting. Now, I am I don't know any of the individuals involved, but I'll bet that every single diabetes related executive involved in this thought something along the lines of, "What are they going to do, invent their own artificial pancreas?" Well, ha, ha, ha, folks. Because as I as I imagine, you know, the first thing that happened was this great woman, Dana Lewis, had a digital insulin pump and a CGM, continuous glucose meter, and her boyfriend, who's now her husband, watched her doing the calculation she had to do before eating a hamburger or whatever and said, "I bet I could write a program that would do that."Dave deBronkart: And so they did. And one thing led to another. His program, and she had some great slides about this, over the course of a year, got really good at predicting what her blood sugar was going to be an hour later. Right. And then they said, "Hmm, well, that's interesting. So why don't I put that in a little pocket computer, a little $35 pocket computer?" The point is, they eventually got to where they said, let's try connecting these devices. All right. And to make a long story short, they now have a system, as you said, not a product, they talked to the FDA, but it's not regulated because it's not a product. Right. But they're not saying the hell with the FDA. They're keeping them informed. What are the scientific credentials of Dana Lewis and her boyfriend, Scott? Dana is a PR professional, zero medical computer or scientific skills? Zero. The whole thing was her idea. Various other people got involved and contributed to the code. It is a trap to think that because the pioneering people had special traits, it's all bogus. Those people are lacking the vision to see what the future you is going to be. See, and the beautiful thing from a disruptive standpoint is that when the person who has the problem gains access to power to create tools, they can take it in whatever direction they want. That's one of the things that happened when typesetting was killed by desktop publishing.Harry Glorikian: Right.Dave deBronkart: In typesetting, they said "You people don't know what you're doing!" And the people said, whatever, dude, they invented Comic Sans, and they went off and did whatever they wanted and the world became more customer centered for them.Harry Glorikian: So. You know, this show is generally about, you know, data, Machine learning and trying to see where that's going to move the needle. I mean, do you see the artificial intelligence umbrella and everything that's under that playing a role to help patients do their own research and design their own treatments?Dave deBronkart: Maybe someday, maybe someday. But I've read enough -- I'm no expert on AI, but I've read enough to know that it's a field that is full of perils of just bad training data sets and also full of immense amounts of risk of the data being misused or misinterpreted. If you haven't yet encountered Cathy O'Neil, she's the author of this phenomenal book, Weapons of Math Destruction. And she said it's not just sloppy brain work. There is sloppy brain work in the mishandling of data in A.I., but there is malicious or ignorant, dangerously ignorant business conduct. For instance, when companies look at somebody who has a bad credit rating and therefore don't give them a chance to do this or this or this or this, and so and they actually cause harm, which is the opposite of what you would think intelligence would be used for.Harry Glorikian: So but then, on the opposite side, because I talk about some of these different applications and tools in in the book where, you know, something like Cardiogram is able to utilize analytics to identify, like it alerted me and said "You know, you might have sleep apnea." Right. And it can also detect an arrhythmia, just like the Apple Watch does, or what's the other one? Oh, it can also sort of alert you to potentially being prediabetic. Right. And so you are seeing, I am seeing discrete use cases where you're seeing a movement forward in the field based on the analytics that can be done on that set of data. So I think I don't want to paint the whole industry as bad, but I think it's in an evolutionary state.Dave deBronkart: Absolutely. Yes. We are at the dawn of this era, there's no question. We don't yet have much. We're just going to have to discover what pans out. Really, I. Were you referring to the Cardia, the Acor, the iPhone EKG device a moment ago?Harry Glorikian: No, there's there's actually an, I've got one here, which is the you know...Dave deBronkart: That's it. That's the mobile version. Exactly. Yeah. Now, I have a friend, a physician friend at Beth Israel Deaconess, who was I just rigidly absolutely firmly trust this guy's brain intelligence and not being pigheaded, he was at first very skeptical that anything attached to an iPhone could be clinically useful. But he's an E.R. doc and he now himself will use that in the E.R. Put the patient's fingers on those electrodes and and send it upstairs because the information, when they're admitting somebody in a crisis, the information gets up there quicker than if he puts it in the EMR.Harry Glorikian: Well, you know, I always try to tell people like these devices, you know, they always say it's not good enough, it's not good enough. And I'm like, it's not good enough today. But it's getting better tomorrow and the next day. And then they're going to improve the sensor. And, yep, you know, the speed of these changes is happening. It's not a 10 year shift. It's it's happening in days, weeks, months, maybe years. But, you know, this is a medical device on my arm as far as I'm concerned.Harry Glorikian: It's a device that does medical-related things. It certainly doesn't meet the FDA's definition of a medical device that requires certification and so on. Now, for all I know, maybe two thirds of the FDA's criteria are bogus. And we know that companies and lobbyists have gamed the system. It's an important book that I read maybe five years ago when it was new, was An American Sickness about the horrifying impacts of the money aspect of health care. And she talked about, when she was talking specifically about device certification, she talked about how some company superbly, and I don't know if they laughed over their three martini lunch or what, some company superbly got something approved by the FDA as saying, we don't need to test this because it's the same as something else.Harry Glorikian: Ok, equivalence.Dave deBronkart: And also got a patent on the same thing for being completely new. Right. Which is not possible. And yet they managed to win the argument in both cases. So but the this is not a medical device, but it is, gives me useful information. Maybe we should call it a health device.Harry Glorikian: Right. Yeah, I mean, there are certain applications that are, you know, cleared by the FDA right now, but, you know, I believe what it's done is it's allowing these companies to gather data and understand where how good the systems are and then apply for specific clearances based on when the system gets good enough, if that makes sense.Dave deBronkart: Yes. Now, one thing I do want to say, there's an important thing going on in the business world, those platforms. You know, companies like Airbnb, Uber, whatever, where they are, a big part of their business, the way they create value is to understand you better by looking at your behavior and not throwing so much irrelevant crap at you. Now, we all know this as it shows up. As you know, you buy something on Amazon and you immediately get flooded by ads on Facebook for the thing that you already bought, for heaven's sake. I mean, how stupid is that? But anyway, I think it's toxic and should be prohibited by law for people to collect health data from your apps and then monetize it. I think that should be completely unacceptable. My current day job is for this company called Pocket Health, where they collect a patient's radiology images for the patient so the patient can have 24/7 access in the cloud. And when I joined there, a friend said, oh, I gather they must make their money by selling the data. Right? And I asked one of the two founding brothers, and he was appalled. That's just not what they do. They have another part of the company. And anybody who gets any medical device, any device to track their health should make certain that the company agrees not to sell it.[musical interlude]Harry Glorikian: Let's pause the conversation for a minute to talk about one small but important thing you can do, to help keep the podcast going. And that's to make it easier for other listeners discover the show by leaving a rating and a review on Apple Podcasts.All you have to do is open the Apple Podcasts app on your smartphone, search for The Harry Glorikian Show, and scroll down to the Ratings & Reviews section. Tap the stars to rate the show, and then tap the link that says Write a Review to leave your comments. It'll only take a minute, but you'll be doing us a huge favor.And one more thing. If you like the interviews we do here on the show I know you'll   like my new book, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer.It's a friendly and accessible tour of all the ways today's information technologies are helping us diagnose diseases faster, treat them more precisely, and create personalized diet and exercise programs to prevent them in the first place.The book is now available for pre-order. Just go to Amazon and search for The Future You, Harry Glorikian.Thanks. And now back to our show.[musical interlude]Harry Glorikian: You mentioned FHIR or, you know, if I had to spell it out for people, it's Fast Healthcare Interoperability Resource standard from, I think, it's the Health Level 7 organization. What is FHIR? Where did it come from and what does it really enable?Dave deBronkart: So I'll give you my impression, which I think is pretty good, but it may not be the textbook definition. So FHIR is a software standard, very analogous to HTTP and HTML for moving data around the same way those things move data around on the Web. And this is immensely, profoundly different from the clunky, even if possible, old way of moving data between, say, an Epic system, a Cerner system, a Meditech system nd so on. And the it's a standard that was designed and started five or six years ago by an Australian guy named Graham Grieve. A wonderful man. And as he developed it, he offered it to HL7, which is a very big international standards organization, as long as they would make it free forever to everyone. And the important thing about it is that, as required now by the final rule that we were discussing, every medical record system installed at a hospital that wants to get government money for doing health care for Medicare or Medicaid, has to have what's called a FHIR endpoint. And a FHIR endpoint is basically just a plug on it where you can, or an Internet address, the same way you can go to Adobe.com and get whatever Adobe sends you, you can go to the FHIR endpoint with your login credentials and say, give me this patient's health data. That's it. It works. It already works. That's what I use in that My Patient Link app that I mentioned earlier.Harry Glorikian: So just to make it clear to someone that say that's listening, what does the average health care consumer need to know about it, if anything, other than it's accessible? And what's the part that makes you most excited about it?Harry Glorikian: Well, well, well. What people need to know about it is it's a new way. Just like when your hospital got a website, it's a new way for apps to get your data out of the hospital. So when you want it, you know that it has to be available that way. Ironically, my hospital doesn't have a FHIR endpoint yet. Beth Israel Deaconess. But they're required to by the end of the year. What makes me excited about it is that... So really, the universal principle for everything we've discussed is that knowledge is power. More precisely, knowledge enables power. You can give me a ton of knowledge and I might not know what to do with it, but without the knowledge, I'm disempowered. There's no dispute about that. So it will become possible now for software developers to create useful tools for you and your family that would not have been possible 15 years ago or five years ago without FHIR. In fact, it's ironic because one of the earliest speeches I gave in Washington, I said to innovators, data is fuel. Right. We talked about Quicken and Mint. Quicken would have no value to anybody if they couldn't get at your bank information. Right. And that's that would have prevented. So we're going to see new tools get developed that will be possible because of FHIR and the fact that the federal regulations require it.Harry Glorikian: Yeah, my first one of my first bosses actually, like the most brilliant boss, I remember him telling me one at one time, he goes, "Remember something: Knowledge is power." I must have been 19 when he told me that. And I was, you know, it took me a little while to get up to speed on what he meant by that. But so do you believe FHIR is a better foundation for accessing health records than previous attempts like Google Health or Microsoft Health Vault?Dave deBronkart: Well, those are apples and oranges. FHIR is a way of moving the data around. Several years into my "Give me my damn data" campaign, I did a blog post that was titled I Want a Health Data Spigot. I want to be able to connect the garden hose to one place and get all my data flowing. Well, that's what FHIR is now. What's at the other end of the hose? You know, different buckets, drinking glasses, whatever. That's more analogous to Google Health and Health Vault. Google Health and Health Vault might have grown into something useful if they could get all the important information out there, which it turns out was not feasible back then anyway. But that's what's going to happen.Harry Glorikian: What is the evolution you'd like to see in the relationship between the patient and the U.S. health care systems? You know, you once said the key to be would get the money managers out of the room. You know, if you had to sort of think about what you'd want it to evolve to, what would it be?Dave deBronkart: Well, so. There are at least two different issues involved in this. First of all, in terms of the practice of medicine, the paradigm of patient that I mentioned, collaboration, you know, collaboration, including training doctors and nurses on the feasibility and methods of collaboration. How do you do this differently? That won't happen fast because the you know, the I mean, the curriculum in medical schools doesn't change fast. But we do have mid career education and we have people learning practical things. So there's a whole separate issue of the financial structure of the U.S. health system, which is the only one I know in the world that is composed of thousands of individual financially separate organizations, each of which has managers who are required by law to protect their own finances. And the missing ingredient is that as all these organizations manage their own finances, nobody anywhere is accountable for whether care is achieved. Nobody can be fired or fined or put out of business for failing to get the patient taken care of as somebody should have. And so those are those are two separate problems. My ideal world is, remember a third of the US health care spending is excess and somebody a couple of years ago...Guess what? A third of the US health care spending is the insurance companies. Now, maybe the insurance companies are all of the waste. I don't know. I'm not that well-informed. But my point is there is plenty of money there already being spent that would support doctors and nurses spending more time with you and me beyond the 12 or 15 minutes that they get paid for.Harry Glorikian: So it's interesting, right? I mean, the thing that I've sort of my bully pulpit for, for a long time has been, once you digitize everything, it doesn't mean you have to do everything the same way. Which opens up, care may not have to be given in the same place. The business model may now be completely open to shift, as we've seen with the digitization of just about every other business. And so I you know, I worry that the EMRs are holding back innovation and we're seeing a lot of innovation happen outside of the existing rubric, right, the existing ivory towers, when you're seeing drug development using A.I. and machine learning, where we're seeing imaging or pathology scans. I mean, all of those are happening by companies that are accessing this digitized data and then providing it in a different format. But it's not necessarily happening inside those big buildings that are almost held captive by the EMR. Because if you can't access the data, it's really hard to take it to that next level of analytics that you'd like to take it to.Dave deBronkart: Yes, absolutely.Harry Glorikian: I mean, just throwing that out there, I know we've been talking about the system in particular, but I feel that there's the edges of the system aren't as rigid as they used to be. And I think we have a whole ecosystem that's being created outside of it.Harry Glorikian: Absolutely. And the when information can flow you get an increasing number of parties who can potentially do something useful with it, create value with it. And I'm not just talking about financial value, but achieve a cure or something like that. You know, interestingly, when the industry noticed what the open apps people were doing, all of a sudden you could no longer buy a CGM that had the ability to export the data.Harry Glorikian: Right.Dave deBronkart: Hmm. So somebody is not so happy about that. When an increasing number of people can get out data and combine it with their other ideas and skills and try things, then the net number of new innovations will come along. Dana Lewis has a really important slide that she uses in some presentations, and it ties in exactly with Erich von Hippel's user driven innovation, which of course, shows up in health care as patient driven innovation. The traditional industrial model that von Hippel talks about is if you're going to make a car, if you're going to be a company going into the car business, you start by designing the chassis and doing the wheels and designing the engine and so on and so on. And you do all that investment and you eventually get to where you've got a car. All right. Meanwhile, Dana shows a kid on a skateboard who can get somewhere on the skateboard and then somebody comes up with the idea of putting a handle on it. And now you've scooter. Right. And so on. The user driven innovations at every moment are producing value for the person who has the need.Harry Glorikian: Right. And that's why I believe that, you know, now that we've gotten to sort of that next level of of datafication of health care, that these centers have gotten cheaper, easier, more accessible. You know, like I said, I've got a CGM on my arm. Data becomes much more accessible. FHIR has made it easier to gain access to my health record. And I can share it with an app that might make that data more interpretable to me. This is what I believe is really sort of moving the needle in health care, are people like Matthew Might doing his own work where it's it's changing that. And that's truly what I try to cover in the book, is how these data [that] are now being made accessible to patients gives them the opportunity to manage their own health in a better way or more accurately and get ahead of the warning light going on before the car breaks down. But one of the things I will say is, you know, I love my doctor, but, you know, having my doctor as a partner in this is makes it even even better than rather than just me trying to do anything on my own. Dave deBronkart: Of course, of course. Dr. Sands is fond of saying "I have the medical training or diagnosis and treatment and everything, but Dave's the one who's the expert on what's happening in his life." Right. And and I'm the expert on my own priorities.Harry Glorikian: Right. Which I can't expect. I mean, my doctor has enough people to worry about, let alone like, me being his sole, the only thing he needs to think about. So, Dave, this was great. It was great having you on the show. I hope this is one of many conversations that we can have going forward, because I'm sure there's going to be different topics that we could cover. So I appreciate you taking the time and being on the show.Dave deBronkart: Well, and same to you. The this has been a very stimulating I mean, and the you've got the vision of the arriving future that is informed by where we're coming from, but not constrained by the old way of thinking. And that really matters. The reality, the emerging reality, whether anybody knows it or not, is that people with a big problem are able to act now in ways that they weren't before. I mean, another amazing example is a guy in England named Tal Golesworthy has Marfan syndrome. And one problem that people with Marfan syndrome face is aortic dissection. The walls of the aorta split open and it can be pretty quickly fatal. And he describes himself in his TED talk as a boiler engineer. And he says when we have a weak pipe, we wrap it. So he came up with the idea of exporting his CAT scan data or the MRI data of his beating heart and custom printing a fabric mesh to wrap around his aorta. And it's become and medically accepted treatment now. Harry Glorikian: That's awesome, right.Dave deBronkart: This is the data in the hands of somebody with no medical training, just. But see, that's the point. That's the point. He enabled by the data, is able to create real value, and it's now an accepted treatment that's called PEARS and it's been done hundreds of times. And, you know, here's a beautiful, it's sort of like the Dana Lewis skateboard scooter progression, years later, a subsequent scan discovered something unexpected. The mesh fabric has migrated into the wall of his aorta. So he hadn't he now has a know what doctor, what hospital, what medical device company would have ever dreamed of trying to create that? That's the beauty of liberation when data gets into the hands of the innovators.Harry Glorikian: Well, that's something that everybody can take away from today is at least thinking about their data, how it can help them manage their health better or their life better. Obviously, I always say, in cahoots with your doctor, because they have very specific knowledge, but having the data and managing yourself is better than not having the data and not understanding how to manage yourself. So on that note, Dave, thank you so much for the time today. It was great.Dave deBronkart: Thank you very much. See you next time.Harry Glorikian:That's it for this week's episode. You can find past episodes of The Harry Glorikian Show and MoneyBall Medicine at my website, glorikian.com, under the tab Podcasts.Don't forget to go to Apple Podcasts to leave a rating and review for the show.You can find me on Twitter at hglorikian. And we always love it when listeners post about the show there, or on other social media. Thanks for listening, stay healthy, and be sure to tune in two weeks from now for our next interview.

Innovation is not like switching on a lightbulb for the world. Rather it's local iterative, persistent steps. Thoughts from the Patient Experience Symposium. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Oy, the noise in my head 02:09. 1 Let's start positive. 03:14. 1 Research and innovation 06:18. 2 Prioritizing innovation – limits 08:32. 3 Innovations in engagement – innovators need innovative settings 09:04. 3 Reflection 09:50  3 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Web/social media coach, Kayla Nelson Photo by Ross Findon on Unsplash Inspired by and grateful to Jan Oldenburg, Kristin Carman, Joanna Siegel, Juhan Sonin, Laura Marcial, James Harrison Sponsored by Abridge Support Health Hats, the Podcast financially Links Patient Experience Symposium COVID-19 Through the Eyes of an American Refugee: A Story of Engagement Co-Designing Telehealth with Patients the Cambridge Health Alliance the Society of Participatory Medicine Hospitals Collaborate to Ensure COVID Care for Every Coloradan Kaiser Permanente funds community health innovations Patient-Centered Outcomes Research Institute, Request for Information: Science of Engagement Funding Initiative Harlan Krumholz Keynote Patient-Powered Research Related podcasts and blogs https://health-hats.com/community-rocks/ https://health-hats.com/cinderblocks4-medical-advocacy-at-its-best/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem As I left the Patient Experience Symposium in Boston, (Yes, an in-person conference. How weird!) I felt schizophrenic. On the one hand, has the healthcare industry progressed at all hardwiring the improvement of patient experience? On the other, OMG, so much innovation! I listened to dedicated, diehard patient experience professionals teeming with frustration at the setbacks occurring during COVID-19 days. Families excluded from the bedside; people dying alone; active, engaged, mature patient-family infrastructure canceled, dying on the vine. I also sat rapt, hearing diverse community representatives inspired by collaborative local COVID-19 problem-solving. In this episode, I will muse about healthcare innvation, while trying to stay positive. Thanks to the Society of Participatory Medicine for subsidizing my attendanc...

The podcast is back with a new name and a new, expanded focus! Harry will soon be publishing his new book The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer. Like his previous book MoneyBall Medicine, it's all about AI and the other big technologies that are transforming healthcare. But this time Harry takes the consumer's point of view, sharing tips, techniques, and insights we can all use to become smarter, more proactive participants in our own health. The show's first guest under this expanded mission is Dave deBronkart, better known as "E-Patient Dave" for his relentless efforts to persuade medical providers to cede control over health data and make patients into more equal partners in their own care. Dave explains how he got his nickname, why it's so important for patients to be more engaged in the healthcare system, and what kinds of technology changes at hospitals and physician practices can facilitate that engagement. Today we're bringing you the first half of Harry and Dave's wide-ranging conversation, and we'll be back on October 12 with Part 2.Dave deBronkart is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world's leading advocates for patient engagement. After beating stage IV kidney cancer in 2007, he became a blogger, health policy advisor, and international keynote speaker, and today is the best-known spokesman for the patient engagement movement. He is the co-founder and chair emeritus of the Society for Participatory Medicine, and has been quoted in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Patient Experience Journal,  iHealthBeat, and the conference journal of the American Society for Clinical Oncology. Dave's 2011 TEDx talk went viral, and is one the most viewed TED Talks of all time with nearly 700,000 views.Please rate and review The Harry Glorikian Show on Apple Podcasts! Here's how to do that from an iPhone, iPad, or iPod touch:1. Open the Podcasts app on your iPhone, iPad, or Mac. 2. Navigate to The Harry Glorikian Show podcast. You can find it by searching for it or selecting it from your library. Just note that you'll have to go to the series page which shows all the episodes, not just the page for a single episode.3. Scroll down to find the subhead titled "Ratings & Reviews."4. Under one of the highlighted reviews, select "Write a Review."5. Next, select a star rating at the top — you have the option of choosing between one and five stars. 6. Using the text box at the top, write a title for your review. Then, in the lower text box, write your review. Your review can be up to 300 words long.7. Once you've finished, select "Send" or "Save" in the top-right corner. 8. If you've never left a podcast review before, enter a nickname. Your nickname will be displayed next to any reviews you leave from here on out. 9. After selecting a nickname, tap OK. Your review may not be immediately visible.That's it! Thanks so much.Full TranscriptHarry Glorikian: Hello. I'm Harry Glorikian. Welcome to The Harry Glorikian Show.You heard me right! The podcast has a new name. And as you're about to learn, we have an exciting new focus. But we're coming to you in the same feed as our old show, MoneyBall Medicine. So if you were already subscribed to the show in your favorite podcast app, you don't have to do anything! Just keep listening as we publish new episodes. If you're not a regular listener, please take a second to hit the Subscribe or Follow button right now. And thank you.Okay. So. Why are we rebranding the show?Well, I've got some exciting news to share. Soon we'll be publishing my new book, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer. It's all about how AI and big data are changing almost everything we know about our healthcare.Now, that might sound a bit like my last book, MoneyBall Medicine. But I wrote that book mainly to inform all the industry insiders who deliver healthcare. Like people who work at pharmaceutical companies, hospitals, health plans, insurance companies, and health-tech startups.With this new book, The Future You, I'm turning the lens around and I'm explaining the impact of the AI revolution on people who consume healthcare. Which, of course, means everyone. That impact is going to be significant, and it's going to change everything from the way you interact with your doctors, to the kind of medicines you take, to the ways you stay fit and healthy.We want you to be prepared for this new world. So we're expanding the focus of the podcast, too. To go along with the new name, we're bringing you interviews with a new lineup of fascinating people who are changing the way patients experience healthcare. And there's nobody better to start out with than today's guest, Dave deBronkart.Dave is best known by the moniker he earned back in the late 2000s: E-Patient Dave. We'll talk about what the E stands for. But all you need to know going in is that ever since 2007, when he survived his own fight with kidney cancer, Dave has been a relentless, tireless advocate for the idea that the U.S. medical system needs to open up so that patients can play a more central role in their own healthcare. He's pushed for changes that would give patients more access to their medical records. And he hasn't been afraid to call out the institutions that are doing a poor job at that. In fact, some folks inside the business of healthcare might even call Dave an irritant or a gadfly. But you know what? Sometimes the world needs people who aren't afraid to shake things up.And what's amazing is that in the years since Dave threw himself into this debate, the world of healthcare policy has started to catch up with him. The Affordable Care Act created big incentives for hospitals and physician practices to switch over to digital recordkeeping. In 2016 the Twenty-First Century Cures Act prohibited providers from blocking access to patients' electronic health information. And now there's a new interface standard called FHIR that promises to do for medical records what HTML and HTTP did for the World Wide Web, and make all our health data more shareable, from our hospital records to our genomics data to the fitness info on our smartphones.But there's a lot of work left to do. And Dave and I had such a deep and detailed conversation about his past work and how patients experience healthcare today that we're going to break up the interview into two parts. Today we'll play the first half of our interview. And in two weeks we'll be back with Part 2. Here we go.Harry Glorikian: Dave, welcome to the show.Dave deBronkart: Thank you so much. This is a fascinating subject, I love your angle on the whole subject of medicine.Harry Glorikian: Thank you. Thank you. So, Dave, I mean, you have been known widely as what's termed as E-patient Dave. And that's like a nickname you've been using in public discussions for, God, at least a decade, as far as I can remember. But a lot of our listeners haven't heard about that jargon word E-patient or know what E stands for. To me, it means somebody who is assertive or provocative when it comes to managing their own health, you know, with added element of being, say, tech savvy or knowing how to use the Internet, you know, mobile, wearable devices and other digital tools to monitor and organize and direct their own care—-all of which happens to describe the type of reader I had in mind when I wrote this new book that I have coming out called The Future You. So how would you describe what E- patient [means]?Dave deBronkart: You know, it's funny because when you see an E-patient or talk with them, they don't stick out as a particularly odd, nerdy, unusual sort of person. But the the term, we can get into its origins back in the 90s someday if you want to, the term has to do with somebody who is involved. What today is in medicine is called patient engagement. And it's funny because to a lot of people in health care, patient engagement means getting the patient to do what they tell us to. Right. Well, tvhere's somebody who's actually an activated, thinking patient, like, I'm engaged in the sense that I want to tell you what's important to me. Right. And I don't just want to do what I'm told. I want to educate myself. That's another version of the E. In general, it means empowered, engaged, equipped, enabled. And these days, as you point out, naturally, anybody who's empowered, engaged and enabled is going to be doing digital things, you know, which weren't possible 20 years ago when the term patient was invented.Harry Glorikian: Yeah, and it's interesting because I was thinking like the E could stand for so many things like, you know, electronic, empowered, engaged, equipped, enabled, right. All of the above. Right. And, you know, I mean, at some point, you know, I do want to talk about access, right, to all levels. But just out of curiosity, right, you've been doing this for a long time, and I'm sure that people have reached out to you. How many E-patients do you think are out there, or as a proportion of all patients at this point?Dave deBronkart: You know, that depends a lot on demographics and stage of life. The, not surprisingly, digital natives are more likely to be actively involved in things just because they're so digital. And these days, by federal policy, we have the ability to look at parts of our medical information online if we want to. As opposed to older people in general are more likely to say just what the doctors do, what they want to. It's funny, because my parents, my dad died a few years ago. My mother's 92. We're very different on this. My dad was "Let them do their work." And my mother is just all over knowing what's going on. And it's a good thing because twice in the last five years, important mistakes were found in her medical record, you know. So what we're at here, this is in addition to the scientific and technological and data oriented changes that the Internet has brought along. We're also in the early stages of what is clearly going to be a massive sociological revolution. And it has strong parallels. I first had this idea years ago in a blog post, but I was a hippie in the 60s and 70s, and I lived through the women's movement as it swept through Boston. And so I've seen lots of parallels. You go back 100 years. I think the you know, we recently hit the 100th anniversary of the 19th Amendment, giving women the right to vote. There were skeptics when the idea was proposed and those skeptics opinions and the things they said and wrote have splendid parallels with many physicians' beliefs about patients.Dave deBronkart: As one example I blogged some years ago, I can send you a link about a wonderful flyer published in 1912 by the National Association Opposed to Women's Suffrage. And it included such spectacular logic as for, I mean, their bullets, their talking points, why we should not give women the vote, the first was "Most women aren't asking for it." Which is precisely parallel to "Most patients aren't acting like Dave, right? So why should we accommodate, why should we adjust? Why should we provide for that? The second thing, and this is another part, is really a nastier part of the social revolution. The second talking point was "Most women eligible to vote are married and all they could do is duplicate or cancel their husband's vote." It's like, what are you thinking? The underlying is we've already got somebody who's voting. Why do we need to bring in somebody else who could only muddy the picture? And clearly all they could do is duplicate or cancel their husband's vote. Just says that the women or the patients, all right, all I could do is get in the way and not improve anything. I bring this up because it's a real mental error for people to say I don't know a lot of E-patients. So it must not be worth thinking about. Harry Glorikian: Yeah, I mean, so, just as a preview so of what we're going to talk about, what's your high-level argument for how we could make it easier for traditional patients to become E-patients?Dave deBronkart: Well, several dimensions on that. The most important thing, though, the most important thing is data and the apps. Harry Glorikian: Yes.Dave deBronkart: When people don't have access to their information, it's much harder for them to ask an intelligent question. It's like, hey, I just noticed this. Why didn't we do something? What's this about? Right. And now the flip side of it and of course, there's something I'm sure we'll be talking about is the so-called final rule that was just published in April of this year or just took effect of this year, that says over the course of the next year, all of our data in medical records systems has to be made available to us through APIs, which means there will be all these apps. And to anybody middle aged who thinks I don't really care that much, all you have to do is think about when it comes down to taking care of your kids or your parents when you want to know what's going on with them. Harry Glorikian: Would you think there would be more E-patients if the health care system gave them easier access to their data? What are some of the big roadblocks right now?Dave deBronkart: Well, one big roadblock is that even though this final federal rule has come out now, the American Medical Group Management Association is pushing back, saying, "Wait, wait, wait, this is a bad idea. We don't need patients getting in the way of what doctors are already doing." There will be foot dragging. There's no question about that. Part of that is craven commercial interests. There are and there have been numerous cases of hospital administrators explicitly saying -- there's one recording from the Connected Health conference a few years ago, Harlan Krumholtz, a cardiologist at Yale, quoted a hospital president who told him, "Why wouldn't I want to make it a little harder for people to take their business elsewhere?"Harry Glorikian: Well, if I remember correctly, I think it was the CEO of Epic who said, “Why would anybody want their data?”Dave deBronkart: Yes. Well, first of all, why I would want my data is none of her damn business. Well, and but that's what Joe Biden -- this was a conversation with Joe Biden. Now, Joe has a, what, the specific thing was, why would you want to see your data? It's 10,000 pages of which you would understand maybe 100. And what he said was, "None of your damn business. And I'll find people that help me understand the parts I want."Harry Glorikian: Yeah. And so but it's so interesting, right? Because I believe right now we're in a we're in a state of a push me, pull you. Right? So if you look at, when you said apps, I think Apple, Microsoft, Google, all these guys would love this data to be accessible because they can then apps can be available to make it more understandable or accessible to a patient population. I mean, I have sleep apps. I have, you know, I just got a CGM, which is under my shirt here, so that I can see how different foods affect me from, you know, and glucose, insulin level. And, you know, I'm wearing my Apple Watch, which tracks me. I mean, this is all interpretable because there are apps that are trying to at least explain what's happening to me physiologically or at least look at my data. And the other day I was talking to, I interviewed the CEO of a company called Seqster, which allows you to download your entire record. And it was interesting because there were some of the panels that I looked at that some of the numbers looked off for a long period of time, so I'm like, I need to talk to my doctor about those particular ones that are off. But they're still somewhat of a, you know, I'm in the business, you've almost learned the business. There's still an educational level that and in our arcane jargon that gets used that sort of, you know, everybody can't very easily cross that dimension.Dave deBronkart: Ah, so what? So what? Ok, this is, that's a beautiful observation because you're right, it's not easy for people to absorb. Not everybody, not off the bat. Look, and I don't claim that I'm a doctor. You know, I still go to doctors. I go to physical therapists and so on and so on. And that is no reason to keep us apart from the data. Some doctors and Judy Faulkner of Epic will say, you know, you'll scare yourself, you're better off not knowing. Well, ladies and gentlemen, welcome to the classic specimen called paternalism. "No, honey, you won't understand." Right now paternal -- this is important because this is a major change enabled by technology and data, right -- the paternal caring is incredibly important when the cared-for party cannot comprehend. And so the art of optimizing and this is where MoneyBall thinking comes in. The art of optimizing is to understand people's evolving capacity and support them in developing that capacity so that the net sum of all the people working on my health care has more competence because I do. Harry Glorikian: Right. And that's where I believe like. You know, hopefully my book The Future You will help people see that they're, and I can see technology apps evolving that are making it easier graphically, making it more digestible so someone can manage themselves more appropriately and optimally. But you mentioned your cancer. And I want to go and at least for the listeners, you know, go a little bit through your biography, your personal history, sort of helping set the stage of why we're having this conversation. So you started your professional work in, I think it was typesetting and then later software development, which is a far cry from E-patient Dave, right? But what what qualities or experiences, do you think, predisposed you to be an E-patient? Is it fair to say that you were already pretty tech savvy or but would you consider yourself unusually so?Dave deBronkart: Well, you know, the unusually so, I mean, I'm not sure there's a valid reason for that question to be relevant. There are in any field, there are pioneers, you know, the first people who do something. I mean, think about the movie Lorenzo's Oil, people back in the 1980s who greatly extended their child's life by being so super engaged and hunting and hunting through libraries and phone calls. That was before there was the Internet. I was online. So here are some examples of how I, and I mentioned that my daughter was gestating in 1983. I took a snapshot of her ultrasound and had it framed and sitting on my office desk at work, and people would say, what's that? Nobody knew that that was going to be a thing now and now commonplace thing. In 1999, I met my second wife online on Match.com. And when I first started mentioning this in speeches, people were like, "Whoa, you found your wife on the Internet?" Well, so here's the thing, 20 years later, it's like no big deal. But that's right. If you want to think about the future, you better be thinking about or at least you have every right to be thinking about what are the emerging possibilities. Harry Glorikian: So, tell us the story about your, you know, renal cancer diagnosis in 2007. I mean, you got better, thank God. And you know, what experience it taught you about the power of patients to become involved in their decision making about the course of treatment?Dave deBronkart: So I want to mention that I'm right in the middle of reading on audio, a book that I'd never heard of by a doctor who nearly died. It's titled In Shock. And I'm going to recommend it for the way she tells the story of being a patient, observing the near fatal process. And as a newly trained doctor. In my case, I went in for a routine physical. I had a shoulder X-ray and the doctor called me the next morning and said, "Your shoulder is going to be fine, but the X-ray showed that there's something in your lung that shouldn't be there." And to make a long story short, what we soon found out was that it was kidney cancer that had already spread. I had five tumors, kidney cancer tumors in both lungs. We soon learned that I had one growing in my skull, a bone metastasis. I had one in my right femur and my thigh bone, which broke in May. I now have a steel rod in my in my thigh. I was really sick. And the best available data, there wasn't much good data, but the best available data said that my median survival. Half the people like me would be dead in 24 weeks. 24 weeks!Harry Glorikian: Yeah.Dave deBronkart: And now a really pivotal moment was that as soon as the biopsy confirmed the disease, that it was kidney cancer, my physician, the famous doctor, Danny Sands, my PCP, because he knew me so well -- and this is why I hate any company that thinks doctors are interchangeable, OK? They they should all fry in hell. They're doing it wrong. They should have their license to do business removed -- because he knew me he said, "Dave, you're an online kind of guy. You might like to join this patient community." Now, think how important this is. This was January 2007, not 2021. Right. Today, many doctors still say stay off the Internet. Dr. Sands showed me where to find the good stuff.Harry Glorikian: Right. Yeah, that's important.Dave deBronkart: Well, right, exactly. So now and this turned out to be part of my surviving. Within two hours of posting my first message in that online community, I heard back. "Thanks for the, welcome to the club that nobody wants to join." Now, that might sound foolish, but I'd never known anybody who had kidney cancer. And here I am thinking I'm likely to die. But now I'm talking to people who got diagnosed 10 years ago and they're not dead. Right? Opening a mental space of hope is a huge factor in a person having the push to move forward. And they said there's no cure for this disease. That was not good news. But the but there's this one thing called high dose Interleukin 2. That usually doesn't work. So this was the patient community telling me usually doesn't work. But if you respond at all, about half the time, the response is complete and permanent. And you've got to find a hospital that does it because it's really difficult. And most hospitals won't even tell you it exists because it's difficult and the odds are bad. And here are four doctors in your area who do it, and here are their phone numbers. Now, ladies and gentlemen, I assert that from the point of view of the consumer, the person who has the need, this is valuable information. Harry, this is such a profound case for patient autonomy. We are all aware that physicians today are very overworked, they're under financial pressure from the evil insurance companies and their employers who get their money from the insurance companies. For a patient to be able to define their own priorities and bring additional information to the table should never be prohibited. At the same time, we have to realize that, you know, the doctors are under time pressure anyway. To make a long story short, they said this this treatment usually doesn't work. They also said when it does work, about four percent of the time, the side effects kill people.Harry Glorikian: So here's a question. Here's a question, though, Dave. So, you know, being in this world for my entire career, it's my first question is, you see something posted in a club, a space. How do you validate that this is real, right, that it's bona fide, that it's not just...I mean, as we've seen because of this whole vaccine, there's stuff online that makes my head want to explode because I know that it's not real just by looking at it. How do you as as a patient validate whether this is real, when it's not coming from a, you know, certified professional?Dave deBronkart: It's a perfect question for the whole concept of The Future You. The future you has more autonomy and more freedom to do things, has more information. You could say that's the good news. The bad news is you've got all this information now and there's no certain source of authority. So here you are, you're just like emancipation of a teenager into the adult life. You have to learn how to figure out who you trust. Yeah, the the good news is you've got some autonomy and some ability to act, some agency, as people say. The bad news is you get to live with the consequences as well. But don't just think "That's it, I'm going to go back and let the doctors make all the decisions, because they're perfect," because they're not, you know, medical errors happen. Diagnostic errors happen. The overall. The good news is that you are in a position to raise the overall level of quality of the conversations.Harry Glorikian: So, you know, talk about your journey after your cancer diagnosis from, say, average patient to E-patient to, now, you're a prominent open data advocate in health care.Dave deBronkart: Yes. So I just want to close the loop on what happened, because although I was diagnosed in January, the kidney came out in March, and my interleukin treatments started in April. And by July, six months after diagnosis, by July, the treatment had ended and I was all better. It's an immunotherapy. When immunotherapy works, it's incredible because follow up scans showed the remaining tumors all through my body shrinking for the next two years. And so I was like, go out and play! And I started blogging. I mean, I had really I had pictured my mother's face at my funeral. It's a, it's a grim thought. But that's how perhaps one of my strengths was that I was willing to look that situation in the eye, which let me then move forward. But in 2008, I just started blogging about health care and statistics and anything I felt like. And in 2009 something that -- I'm actually about to publish a free eBook about that, it's just it's a compilation of the 12 blog posts that led to the world exploding on me late in 2008 -- the financial structure of the U.S. health system meant that even though we're the most expensive system in the world, 50 percent more expensive than the second place country, if we could somehow fix that, because we're the most expensive and we don't have the best outcomes, so some money's being wasted there somewhere. All right. If we could somehow fix that, it would mean an immense amount of revenue for some companies somewhere was going to disappear.Dave deBronkart: Back then, it was $2.4 trillion, was the US health system. Now it's $4 trillion. And I realized if we could cut out the one third that excess, that would be $800 billion that would disappear. And that was, I think, three times as much as if Google went out of business, Apple went out of business and and Microsoft, something like that. So I thought if we want to improve how the system works, I'm happy if there are think tanks that are rethinking everything, but for you and me in this century, we got to get in control of our health. And that had to start with having access to our data. All right. And totally, unbeknownst to me, when the Obama administration came in in early 2009, this big bill was passed, the Recovery Act, that included $40 billion of incentives for hospitals to install medical computers. And one of the rules that came out of that was that we, the patients, had to be able to look at parts of our stuff. And little did I know I tried to use to try to look at my data. I tried to use the thing back then called Google Health. And what my hospital sent to Google was garbage. And I blogged about it, and to my huge surprise, The Boston Globe newspaper called and said they wanted to write about it, and it wasn't the local newspaper, it was the Washington health policy desk. And they put it on Page One. And my life spun out of control.Harry Glorikian: Yeah, no, I remember I remember Google Health and I remember you know, I always try to tell people, medicine was super late to the digitization party. Like if it wasn't for that the Reinvestment and Recovery Act putting that in place, there would still be file folders in everybody's office. So we're still at the baby stage of digitization and then the analytics that go with it. And all I see is the curve moving at a ridiculous rate based on artificial intelligence, machine learning being applied to this, and then the digitized information being able to come into one place. But you said something here that was interesting. You've mentioned this phenomenon of garbage in, garbage out. Right. Can you say more about one of the hospitals that treated you? I think it was Beth Israel. You mentioned Google Health. What went wrong there and what were the lessons you took away from that?Dave deBronkart: Well, there were, so what this revealed to me, much to my amazement, much to my amazement, because I assumed that these genius doctors just had the world's most amazing computers, right, and the computers that I imagined are the computers that we're just now beginning to move toward. Right. RI was wrong. But the other important thing that happened was, you know, the vast majority of our medical records are blocks of text, long paragraphs of text or were back then. Now, it was in a computer then, it wasn't notes on paper, but it was not the kind of thing you could analyze, any more than you could run a computer program to read a book and write a book report on it. And so but I didn't know that. I didn't know what Google Health might do. The next thing that happened was as a result, since Google Health was looking for what's called structured data -- now, a classic example of structured data is your blood pressure. It's fill in a form, the high number, the low number, what's your heart rate? What's your weight, you know? The key value pairs, as some people call them. Very little of my medical history existed in that kind of form. So for some insane reason, what they decided to send Google instead was my insurance billing history.Dave deBronkart: Now, insurance data is profoundly inappropriate as a model of reality for a number of reasons. One of one reason is that insurance form data buckets don't have to be very precise. So at one point I was tested for metastases to the brain to see if I had kidney cancer tumors growing in my brain. The answer came back No. All right. Well, there's only one billing code for it. Metastases to the brain. And that's a legitimate billing code for either one. But it got sent to Google Health as metastases to the brain, which I never had. All right. Another problem is something called up-coding, where insurance billing clerks are trained you can bill for something based on the keywords that the doctors and nurses put in the computer. So at one point during my treatment, I had a CAT scan of my lungs to look for tumors. And the radiologist noted, by the way, his aorta is slightly enlarged. The billing clerk didn't care that they were only checking for kidney cancer tumors. The billing clerk saw aorta, enlarged, aneurysm, and billed the insurance company for an aneurysm, which I never had. Corruption. Corruption. People ask, why are our health care costs so high? It's this system of keyword-driven billing. But then on top of that, I had things that I never had anything like it. There was, when this blew up in the newspaper, the hospital finally released all my insurance billing codes. It turns out they had billed the insurance company for volvulus of the intestine. That's a lethal kink of the intestine that will kill you in a couple of days if it's not treated. Never had anything of the sort. Billing fraud.Harry Glorikian: Interesting.Dave deBronkart: Anyway, because a random patient had just tried to use Google Health and I knew enough about data from my day job to be able to say, "Wait a minute, this makes no sense, why is all this happening?" And I couldn't get a straight answer. You know, it's a common experience. Sometimes you ask a company, "I've got a problem. This isn't right." And sometimes they just blow you off. Well, that's what my hospital did to me. I asked about these specific questions and they just blew me off. So then once it was on the front page of the newspaper, the hospital is like, "We will be working with the E-patient Dave and his doctor." And there's nothing like publicity, huh?[musical interlude]Harry Glorikian: Let's pause the conversation for a minute to talk about one small but important thing you can do, to help keep the podcast going. And that's to make it easier for other listeners discover the show by leaving a rating and a review on Apple Podcasts.All you have to do is open the Apple Podcasts app on your smartphone, search for The Harry Glorikian Show, and scroll down to the Ratings & Reviews section. Tap the stars to rate the show, and then tap the link that says Write a Review to leave your comments. It'll only take a minute, but you'll be doing us a huge favor.And one more thing. If you like the interviews we do here on the show I know you'll   like my new book, The Future You: How Artificial Intelligence Can Help You Get Healthier, Stress Less, and Live Longer.It's a friendly and accessible tour of all the ways today's information technologies are helping us diagnose diseases faster, treat them more precisely, and create personalized diet and exercise programs to prevent them in the first place.The book comes out soon, so keep an eye out for the next announcement.Thanks. And now back to our show.[musical interlude]Harry Glorikian: One of your slogans is "Gimme my damn data," meaning, you know, your patient records. And so can you summarize first, the state of the art prior to this digital transformation? Why was it historically the case that patients didn't have easy access to charts from their doctor's office or their visits? Why has the medical establishment traditionally been reluctant or maybe even unable to share this data?Dave deBronkart: Well, first, I want to explain the origin of that of that term. Because the speech in September of that year that launched the global speaking had that title. What happened was that summer of 2009, my world was spinning out of control as I tried to answer people's questions and get involved in the blogging that was going on and health policy arguments in Washington and so on. And so a real visionary in Toronto, a man named Gunther Eisenbach, who had quite a history in pioneering in this area, invited me to give the opening keynote speech for his annual conference in Toronto that fall. And several times during the summer, he asked me a question I'd never been asked. I came to learn that it was normal, but it was "For our brochure, we need to know what do you want to call the speech? What's the title of the speech?" And I remember very well sitting in my office at work one day saying into the telephone, "I don't know, just call it 'Give me my damn data, because you guys can't be trusted." And much to my amazement, It stuck.Dave deBronkart: I want to be clear. Under the 1996 health information law called hip hop, you are entitled to a copy of every single thing they have about you. All right, and a major reason for that. Back in the beginning was to detect mistakes. So it's interesting because HIPAA arose from health insurance portability. 1996 was when it first became mandatory that you had to be able to take your insurance business elsewhere and therefore your records. And that's the origin of the requirement that anybody who holds your health information as part of your insurance or anything else has to be really careful about not letting it leak out. And therefore and it has to be accurate. Therefore, you have a right to look at it and get any mistakes fixed. But. Foot dragging, foot dragging, foot dragging. I don't want to. As we discussed earlier, there are some doctors who simply wanted to keep you captive. But there are also, the data was also handwritten garbage at times, just scribbles that were never intended to be read by anyone other than the person who wrote the note in the first place. Harry Glorikian: Well, but, you know, I'm not trying to necessarily defend or anything, but but, you know, as you found at Beth Israel Deaconess, and I talk about this in The Future You as well, part of the problem is most of these things that people look at as large electronic health record systems were are still are in my mind designed as accounting and billing systems, not to help the doctors or the patients. And that's still a major problem. I mean, I think until we have, you know, a Satya Nadella taking over Microsoft where he, you know, went down and started rewriting the code for Microsoft Office, you're not going to get to management of patients for the betterment of their health as opposed to let me make sure that I bill for that last Tylenol.Dave deBronkart: Absolutely. Well, and where I think this will end up, and I don't know if it'll be five years or 10 or 20, but where this will end up is, the system as it exists now is not sustainable as a platform for patient-centered care. The early stage that we're seeing now, there is an incredibly important software interface that's been developed in the last five or six years still going on called FHIR, F-H-I-R. Which is part of that final rule, all that. So all of our data increasingly in the next couple of years has to be available through an API. All right. So, yeah, using FHIR. And I've done some early work on collecting my own data from the different doctors in the hospitals I've gone to. And what you get what you get when you bring those all in, having told each of them your history and what medications you're on and so on, is you get the digital equivalent of a fax of all of that from all of them. That's not coordinated, right. The medication list from one hospital might not match even the structure, much less the content of the medication list. And here's where it gets tricky, because anybody who's ever tried to have any mistake fixed at a hospital, like "I discontinued that medicine two years ago," never mind something like, "No, I never had that diagnosis," it's a tedious process, tons of paperwork, and you've got to keep track of that because they so often take a long time to get them fixed. And I having been through something similar in graphic arts when desktop publishing took over decades ago. I really wonder, are we will we ultimately end up with all the hospitals getting their act together? Not bloody likely. All right. Or are we more likely to end up with you and me and all of us out here eventually collecting all the data and the big thing the apps will do is organize it, make sense of it. And here's a juicy thing. It will be able to automatically send off corrections back to the hospital that had the wrong information. And so I really think this will be autonomy enabled by the future, you holding your own like you are the master copy of your medical reality.Harry Glorikian: Yeah, I always you know, I always tell like what I like having as a longitudinal view of myself so that I can sort of see something happening before it happens. Right. I don't want to go in once the car is making noise. I like just I'd like to have the warning light go off early before it goes wrong. But. So you mentioned this, but do you have any are there any favorite examples of patient friendly systems or institutions that are doing data access correctly?Dave deBronkart: I don't want to finger any particular one as doing a great job, because I haven't studied it. Ok. I know there are apps, the one that I personally use, which doesn't yet give me a useful it gives me a pile of fax pages, but it does pull together all the data, it's it's not even an app, it's called My Patient Link. And anybody can get it. It's free. And as long as the hospitals you're using have this FHIR software interface, which they're all required to, by the way, but some still don't. As long as they do this, My Patient Link will go and pull it all together. Now it's still up to you to do anything with it. So we're just at the dawn of the age that I actually envisioned back in 2008 when I decided to do the Google Health thing and the world blew up in my face.Harry Glorikian: Yeah. I mean, I have access to my chart. And, you know, that's useful because I can go look at stuff, but I have to admit, and again, this is presentation and sort of making it easy to digest, but Seqster sort of puts it in a graphical format that's easier for me to sort of absorb. The information is the same. It's just how it gets communicated to me, which is half the problem. But but, you know, playing devil's advocate, how useful is the data in the charts, really? I mean, sometimes we talk as if our data is some kind of treasure trove of accurate, actionable data. But you've helped show that a lot of it could be, I don't want to say useless, but there's errors in it which technically could make it worse than useless. But how do you think about that when you when you think about this?Dave deBronkart: Very good. First note. First of all, you're right. It will...a lot of the actual consumer patient value will, and any time I think about that again, I think a lot of young adults, I think of parents taking care of a sick kid, you know, or middle aged people taking care of elders who have many declining conditions. Right. There's a ton of data that you really don't care about. All right, it's sort of it's like if you use anything like Quicken or Mint, you probably don't scrutinize every detail that's in there and look for obscure patterns or so on. But you want to know what's going on. And here's the thing. Where the details matter is when trouble hits. And what I guarantee we will see some time, I don't know if it'll be five years, 10, or 20, but I guarantee what we will see someday is apps or features within apps that are tuned to a specific problem. If my blood pressure is something I'm.... Six years ago my doctor said, dude, you're prediabetic, your A1C is too high. Well, that all of a sudden brings my focus on a small set of numbers. And it makes it really important for me to not just be tracking the numbers in the computer, but integrate it with my fitness watch and my diet app.Harry Glorikian: Right. Dave deBronkart: Yeah, I lost 30 pounds in a year. And then at the age of 65, I ran a mile for the first time in my life because my behavior changed. My behavior had changed to my benefit, not because of the doctor micromanaging me, but because I was all of a sudden more engaged in getting off my ass and doing something that was important to me.Harry Glorikian: well, Dave, you need to write a diet book, because I could use I could stand to lose like 10 or 20 pounds.Dave deBronkart: Well, no, I'm not writing any diet books. That's a project for another day. Harry Glorikian: That's it for this week's episode. Dave and I had a lot more to talk about, and we'll bring you the second part of the conversation in the next episode, two weeks from now.You can find past episodes of The Harry Glorikian Show and MoneyBall Medicine at my website, glorikian.com. Don't forget to go to Apple Podcasts to leave a rating and review for the show. You can find me on Twitter at hglorikian. And we always love it when listeners post about the show there, or on other social media. Thanks for listening, stay healthy, and be sure to tune in two weeks from now for our next interview. 

Juhan Sonin specializes in healthcare design and system engineering. He is the director of GoInvo (goinvo.com). The studio's designs helped 700,000 Massachusetts residents receive food benefits, are used by Wikipedia to explain complex health concepts, and help manage care plans for 150 million US residents. His work has been recognized by the New York Times, Newsweek, BBC International, Wired Magazine, and NPR and he's published in The Journal of Participatory Medicine and The Lancet. Juhan has spent time at Apple, the National Center for Supercomputing Applications (NCSA), Massachusetts Institute of Technology (MIT) and MITRE. He currently lectures on design and engineering at MIT. Juhan's laser focus on healthcare and open source design has affected national efforts for the United States Department of Health and Human Services (HHS) to the National Institutes of Health (NIH) to the California Healthcare Foundation (CHCF). His open source healthcare products have also been leveraged by Walgreens, Crossover Health, and Hallmark Clinics, to name a few. Next up in 2021 they are working to lead an open source, national push for patients owning their data. Bon and Juhan talk about open source healthcare, the need for a longitudinal health record for patients, and why Juhan shared his own genome publicly.

A psychologist and psychiatrist are both mental health professionals who can treat schizophrenia. But what's the difference? Both specialities are commonly referred to as doctors and confusion often results. Today's episode tackles the differences and touches on what a person visiting with each professional can expect.  People with schizophrenia commonly wonder: How are they similar? Who should they see first? Do they need to see both? Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard, share their medical health journeys in treatment with numerous doctors and how both psychologists and psychiatrists have played an important part.  Guest John Grohol, PsyD, founder of PsychCentral.com and a psychologist, joins to help people understand the differences between the two. To read the transcript or learn more, please visit the the official episode page here. Guest Bio Dr. John Grohol is the founder of Psych Central. He's an author, researcher, and expert in mental health online, and has been writing about online behavior, mental health, and psychology issues since 1995. Grohol has a Master's degree and a doctorate in clinical psychology from Nova Southeastern University. He sits on the editorial board of the journal Computers in Human Behavior and is a founding board member of the Society for Participatory Medicine.   About the Inside Schizophrenia Podcast Host Rachel Star Withers creates videos documenting her schizophrenia, ways to manage, and let others like her know they're not alone and can still live an amazing life. She has written “Lil Broken Star: Understanding Schizophrenia for Kids” and a tool for schizophrenics, “To See in the Dark: Hallucination and Delusion Journal.” Learn more at RachelStarLive.com. About the Inside Schizophrenia Podcast Co-Host Gabe Howard lives with bipolar disorder and is a nationally recognized speaker and podcast host. He is the author of the book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies available directly from the author. To learn more about Gabe, please visit gabehoward.com.

A Chat Among Friends: Insights On Living Well With AutoimmuneAired Friday, August 6, 2021 at 4:00 PM PST / 7:00 PM ESTIn this episode, I catch up with patient advocate and friend Kristal Kent. It's a free-flowing conversation we recently had about our best learnings from our wellness journey to thrivers and advocacy. Just some of what we chat about is:• The power of sharing stories of ‘invisible illness'• How to talk about your diagnosis• Your diagnosis is not your identity• Uncovering medical ‘gaslighting'• Inexpensive wellness and well-being hacks and more…Our guest:Kristal Kent is an Army Veteran Living with Fibromyalgia, Arthritis, Degenerative Disc Disease, and other Chronic Illnesses and Chronic Pain Conditions. Kristal advocates on behalf of the Fibromyalgia and Veteran Communities, focusing on Awareness, Education, and Legislative Advocacy initiatives. Kristal's advocacy work has been recognized Nationally and Internationally. Kristal is the founder of The Fibromyalgia Pain Chronicles and Veteran Voice For Fibromyalgia and she currently volunteers as a Board of Trustee for the Fibromyalgia Care Society of America and the Cleveland Clinic Patient Panel. Kristal is also a member of the Society for Participatory Medicine and Savvy Coop and previously served on the WEGO Health Patient Leader Advisory Board.Learn more about Kristal and her powerful work at https://www.facebook.com/FibroPainChronicles/ The information provided on UnderstandingAutoimmune.com, Life InterruptedRadio.com, and The Autoimmune Hour is for educational purposes only.Visit the Autoimmune Hour show page https://omtimes.com/iom/shows/autoimmune-hour/Connect with Sharon Sayler at http://lifeinterruptedradio.com/#KristalKent #SharonSayler #AutoImmuneHour

In this episode, I catch up with patient advocate and friend Kristal Kent. It's a free-flowing conversation we recently had about our best learnings from our wellness journey to thrivers and advocacy. Just some of what we chat about is:• The power of sharing stories of ‘invisible illness'• How to talk about your diagnosis • Your diagnosis is not your identity• Uncovering medical ‘gaslighting'• Inexpensive wellness and well-being hacks and more…Our guest: Kristal Kent is an Army Veteran Living with Fibromyalgia, Arthritis, Degenerative Disc Disease, and other Chronic Illnesses and Chronic Pain Conditions. Kristal advocates on behalf of the Fibromyalgia and Veteran Communities, focusing on Awareness, Education, and Legislative Advocacy initiatives. Kristal's advocacy work has been recognized Nationally and Internationally. Kristal is the founder of The Fibromyalgia Pain Chronicles and Veteran Voice For Fibromyalgia and she currently volunteers as a Board of Trustee for the Fibromyalgia Care Society of America and the Cleveland Clinic Patient Panel. Kristal is also a member of the Society for Participatory Medicine and Savvy Coop and previously served on the WEGO Health Patient Leader Advisory Board.  Learn more about Kristal and her powerful work at https://www.facebook.com/FibroPainChronicles/Share this show link with family and friends: www.UnderstandingAutoimmune.com/LivingWell The information provided on UnderstandingAutoimmune.com, Life InterruptedRadio.com, and The Autoimmune Hour is for educational purposes only.

Uri Goren is the head of digital engagement and capabilities at Teva Pharmaceuticals, and just recently became a member of the National Advisory Board for digital health for the Israel Ministry of Health. Uri founded and continues to contribute insights through his digital magazine, e-Pochonder and is one of the first advocates for patient centric health care.Interview milestones:02:25 How did you decide to become a trailblazer and advocate for patient-centric healthcare? 07:20 When do you think it is the most important moment to listen to patients?11:50 Tell us about the Society of Participatory Medicine and the E-Patient Movement. 17:02 How can we keep that balance of - the empowered patient, who is the most important person in the room, with the knowledge and judgment of the medical professional whose recommendations should be trusted?21:40 Do you think breaking away from traditional channel to market is happening on a wide scale in the industry? 25:51 Do you have any comments on how you're using different digital channels for your personal and professional messaging? And what is the difference between them when you make a decision about which channel to use?30:37 How many hours a day do you commit or spend in order to promote these channels? 32:30 How much time do you spend on an average day on digital media34:14 What you do at Teva?37:38 What exactly is digitalization of B2B?40:28 Are there any social networking tools that you can use to differentiate B2B from B2C?43:32 What is the National Advisory Board for digital health for the Ministry of Health in and what are your goals in the advisory board?48:12 What are you seeing that is special in the Israeli Digital Health ecosystem? And what do you think is missing, and maybe entrepreneurs should pay more attention to?52:21 What is the main problem do you think that needs to be solved for the healthcare market with technology? 

Liz Salmi is Senior Strategist of Dissemination for OpenNotes at Beth Israel Deaconess Medical Center. In this role, Liz helps hospitals and health systems understand the changing nature of patient-clinician communication in the digital age, and interpret and implement research emerging from the “open notes” movement. After being diagnosed with a malignant brain tumor at age 29, Liz immediately put her digital communications skills to use by blogging, chronicling her daily symptoms, and seeing how much she could learn from her online patient portal. Today, her research areas of interest include studying how healthcare professionals and patients are connecting through digital tools and joining as partners in research. Liz leads the Brain Cancer Quality of Life Collaborative, a multi-stakeholder group dedicated to advancing science and improving the quality of life for people with malignant brain tumors. Liz was named e-Patient of the Year by the Society for Participatory Medicine.

Dr. Danny Sands is passionate about healthcare transformation. A practicing physician with training and experience in clinical informatics, Dr. Sands has worked in a variety of capacities in the healthcare IT industry for over 25 years. He spent almost 14 years doing clinical informatics at Beth Israel Deaconess Medical Center, where he developed and implemented innovative systems to improve clinical care delivery and patient engagement, including clinical decision support systems, an EHR, and one of the nation's first patient portals. This was followed by leadership positions including Cisco, Zix Corporation, and others. Dr. Sands is the recipient of numerous healthcare honors, including recognition in 2009 by HealthLeaders Magazine as one of “20 People Who Make Healthcare Better.” He is the co-author, with e-Patient Dave deBronkart, of Let Patients Help. Dr. Sands has earned degrees from Brown University, Ohio State University, Harvard School of Public Health, and trained at Boston City Hospital and Boston's Beth Israel Hospital. Dr. Sands holds an academic appointment at Harvard Medical School and maintains a primary care practice at Beth Israel Deaconess Medical Center in which he makes extensive use of health IT—much of which he helped to introduce. In addition to practicing, Dr. Sands works with a number of innovative companies and is a co-founder and the chief advocacy officer of the Society for Participatory Medicine. He is a popular speaker and consultant, blogs at DrDannySands.com and tweets as @DrDannySands.

On this episode Dr. Serenity talks about how to be a savvy health consumer in our current, confusing, capitalist health care system. She discusses important ways to make informed health choices, and some of the things that can make it challenging to prioritize health day-to-day. Explore what it means to find good health information and qualified experts to help you along the way, whether you want to maintain good health or are facing chronic health concerns.We all know how frustrating it can be to deal with health issues. Any person who has gone through our health care system in any significant way knows that our version of modern medicine can present us with repetitive, frustrating, expensive, confusing, and emotionally draining experiences. In other words, getting help isn't easy. American health care costs us time and money, and can be a real pain to navigate.The dynamics of doctor-patient relationships push us to only discuss physical aspects of health, which as we know is only a part of our health story. It misses some really important information. Leaving out the psychosocial aspects of our health inhibits doctors from being able to treat the whole individual. It is hard to know how to best empower patients to make healthy choices on their own, when they are out of the doctor's office. Doctors are historically used to patients relying upon their expert evaluation of the evidence to determine the diagnosis and method of treatment. But when treatment recommendations are made without any explanation as to why this is the best course of action, which is often the case in doctor-patient relationships, the patient is left relying on the doctor to make their decisions rather than being brought on board with that decision. They are treated as a passive recipient rather than a valued partner, and the underlying assumption becomes that for patients to achieve health they must simply adhere to their doctors' recommendations. This paternalistic nature of medicine is dysfunctional and problematic. Ultimately, it creates health consumers who are largely unable to advocate for themselves. Many doctors today work hard to try and avoid paternalism, but it is baked into the system itself. They must work against the system. Doctors and patients must commit to a system of shared decision making where both are active participants in choosing treatment options.Ideally, our health choices would be informed by evidence. We have more information than ever before to help us make good health choices. Doing this requires being very savvy, however, because there is also more misinformation than ever before. Savvy health consumers need to have basic scientific literacy, but they need not be fully trained scientists. A big part of being savvy is also being able to find good professionals to rely on, and how to spot when a seemingly good professional throws up some red flags.Savvy health consumers use competent experts and scientific resources to make health choices that are most likely to be beneficial and move them toward their goals. This means knowing your goals, generally speaking, and being clear about your health values. Each of us will have different things that matter most to us. People need to be properly taught how to question things and think critically using reasoning and evidence. Being savvy means asking why a particular set of health advice is being given or evaluating the evidence for oneself when you have good scientific literacy. But this can lead us down the wrong path when seeming experts or what passes as science is pawned off on unknowing consumers as being legitimate. What is an average health consumer to do when even physicians disagree about the evidence or apparent experts present persuasive but contrasting opinions?A huge weakness in our current system is that consumers are often unable to discern which self-proclaimed experts have valid qualifications and are deserving of their trust versus which are simply trying to profit or who have no legitimate expertise at all. Often, the true experts on a particular topic are siloed in their professional or academic communities, while pseudo-experts flood social media and local communities claiming to have mastered complex health topics.Lots of people attempt to sell health because they are personally interested in it. You can find a gazillion wellness influencers who combine tips and tricks for eating well, staying active, and practicing self-care. Their advice may be sound in principle but is much better sourced from trained physicians, psychologists, dietitians, occupational and physical therapists, or other properly trained allied health professionals who have the training and education to understand the evidence and theories underlying their advice. A savvy health consumer must carefully evaluate the qualifications of any professional before handing over money for a health-related service or product. You deserve health professionals who are properly trained. Take the time to review the qualifications of any potential or current health professional. Given how many highly qualified people now offer affordable and accessible services like weekly newsletters, apps, blogs, or consultations, why would you waste your time and money on someone who is underqualified?When you want to work with someone one-on-one regarding your health, ask yourself these kinds of questions: Does this health professional possess the proper expertise and clinical experience necessary to understand and evaluate my health and advise me? What evidence is this person using to make their recommendations? Is this person more committed to science and integrity or making money? Can this person clearly articulate why this is the best course of action for me using an evidence-based approach? How much will this cost me in terms of time, money, energy, and emotional distress? How invasive are the recommended treatments? (The more invasive the higher your bar for evidence should be.)There are some wonderful resources for people who want to improve their ability to advocate for themselves and make informed health choices. One initiative I like because it is straightforward and easy to remember is the Ask Me 3 campaign. There's a great channel on YouTube called The Psych Show that teaches many things about psychology and mental health. There's an organization called the Society for Participatory Medicine that works to empower doctors and patients to work together as active participants in medical care. There is another website called Science Based Medicine featuring thoughtful and informed articles on a variety of topics written by legitimate scientific experts. These are just a few of the resources available to you that come from highly educated and properly trained professionals. There are many well trained and passionate people from a variety of professional and educational backgrounds who have the proper skills to help you understand and improve your health. Find a health professional who can clearly explain how their recommendations are made using clinical expertise and best available evidence, and who can tailor their recommendations to your personal goals and values.

Dmitry Kaminskiy, Partner, Deep Knowledge Ventures, interviewed by futurist Trond Arne Undheim. In this conversation, they talk about What is longevity and why does it matter if we live longer? Health span v. Lifespan. The Intersection of AgeTech, WealthTech and FinTech. The silver tsunami (of aging). Quality-adjusted life-year (QALY). Scenarios. Rise of policy scene for longevity. Biomarkers on the path to population health. How AI intersects with longevity. P4 (Preventive, Precision, Personalized and Participatory) Medicine. Who will first reach their 123rd birthday? A Manhattan project for longevity. The Longevity Industry 1.0 and 2.0—towards the next trillion dollar industry.The takeaway is that longevity may indeed be the next trillion dollar industry and may perhaps be the most complex industry as well. Staying in good health is an important shared goal across the globe, and our health is constantly under threat from diseases, including aging. However, there is a drastic difference in the goals of increasing healthspan v. increasing life span. To my mind, there might even have to be a significant ethical debate whether life span is worth increasing on a general basis. Do we really need to live that much longer? Is there an optimal life span and does it depend on the available resources or the available meaning of life that the individual has at any given time? These are complex questions without obvious answers. After listening to the episode, check out Deep Knowledge Ventures, Longevity 1.0, the book, as well as Dmitry Kaminskiy's online profile:Deep Knowledge Group https://www.dkv.global/ Longevity 1.0 https://www.longevity-book.com/ Dmitry Kaminskiy (@DmitryKaminskiy) https://www.kaminskiy.info/ and https://www.linkedin.com/in/dmitrykaminskiy/ The show is hosted by Podbean and can be found at Futurized.co. Additional context about the show, the topics, and our guests, including show notes and a full list of podcast players that syndicate the show can be found at https://trondundheim.com/podcast/. Music: Electricity by Ian Post from the album Magnetism. For more about the host, including media coverage, books and more, see Trond Arne Undheim's personal website (https://trondundheim.com/) as well as the Yegii Insights blog (https://yegii.wpcomstaging.com/). Undheim has published two books this year, Pandemic Aftermath and Disruption Games. To advertise or become a guest on the show, contact the podcast host here.Thanks for listening. If you liked the show, subscribe at Futurized.co or in your preferred podcast player, and rate us with five stars. If you like this topic, you may enjoy other episodes of Futurized, such as episode 55 AI for Medicine, episode 19 on Digital Health in Future Pandemics, episode 26 How to Write a book on the Future of Healthcare, episode 30 on Artificial General Intelligence, episode 35 on Augmented Reality, episode 47 on How to invest in Sci-Fi Tech, and episode 54 on the Future of AR. Futurized—preparing YOU to deal with disruption. 

Geri is a patient, family caregiver, and clinician advocate. She works to improve care communication through asynchronous technology, health literacy, and co-design. She currently works with Docola - a social good organization that's created a free care communication platform to help hospitals, clinics and care providers find and e-prescribe education and resources to patients and care partners. She's building a patient education content clearinghouse. Contact her if you'd like to contribute resources to this community platform. She also co-founded the Difference Collaborative and the Difference Collaborative Alliance to help employers ensure working family caregivers can maintain their health, employment, wellbeing, and sanity — and to create a culture of care tol improve the future of work for everyone. They're currently partnering with researchers at the Johns Hopkins and Purdue schools of nursing to understand how organizations can support nurses who are also family caregivers. Nurse managers, nurse leaders and healthcare org HR directors can participate in the study here. Se writes a column on health communication and patient engagement on Healthcare IT Today. She's also active in the Patient Experience Policy Forum, Patient Advocates Transforming Healthcare, and is a lifetime member of the Society for Participatory Medicine. Connect with her on LinkedIn: https://www.linkedin.com/in/geribaumblatt/ Follow her on Twitter at: @GeriLynn @DiffCollab @docolainc

Founders of the Society for Participatory Medicine discuss e-patients and Covid-19.

Janice McCallum, managing director for Health Content Advisors, is a marketing strategist for companies that produce healthcare content or data products. She specializes in developing and assessing business models that leverage the value of data and has a strong focus on how the healthcare industry can improve information access to enable informed decision making. Over her 25 years of consulting, Janice has led engagements with dozens of companies, including Thomson Reuters, Elsevier, D&B, Microsoft Health Solutions Group and some of the top medical journal publishers like NEJM. She also serves as an independent board member for the Journal of Bone & Joint Surgery and is a past board member of The Society for Participatory Medicine. In addition to speaking at industry conferences, Janice is consistently on the #HIT100 list of top contributors to health IT in social media, as well as being a HIMSS social media ambassador for three years. Look Left’s Davida Dinerman recently spoke with Janice McCallum on the Look Left @ Marketing Podcast to talk about a wide range of healthcare and data topics.06:22 - The challenges brought on by today’s vast volumes of data09:16 - Janice’s interest in infodemiology15:46 - The promise and challenges of patient-provided information22:11 - Why aren’t we prescribing more information?25:53 - The development of patient communities27:35 - Not all patients are alike and the system needs to reflect thatNotable quotes:"One of my hot buttons is that we don't spend enough time or put enough dollars or effort into gathering data and preparing data for analysis.” Data is only as valuable as your ability to accurately analyze it: “I think there's a lot of promise in information that patients can provide either through their own observations or through devices and sensors. One of the issues, and, this is an age old problem that I've dealt with since the early days of my computer use, is the data has to be normalized and it has to be in a common format so that analyzation makes sense. If something's not in the same unit as the next item in your data input, then it's not going to make any sense. So "Patient empowerment with agency means the patient can actually direct some of their care and and control information flows.”The difference between engagement and empowerment as it relates to patient data: “The concept of patient engagement that we mostly see now in practice is, ‘Oh, here patient. Here's some more information,’ or ‘Here patient, do this.’ And it's a one-way delivery of orders, if you will. Whereas patient empowerment would be much more of an interactive process."

In this 1-hour course, occupational therapy practitioners will learn about the concepts of eHealth and participatory medicine—and, how they are shaping the future of our profession.Both eHealth and participatory medicine will give you a new lens to understand some of the seismic shifts that are happening in health care right now. And, the good news is that even amidst rapid change, the basic tenet of both concepts, of helping the patient to be more active in their care, has long been a tenant of OT and will leave you feeling affirmed of the value of the work we do.The course will begin with a breakdown of the research, and then Lauren Sheehan, OTD, OTR/L, an occupational therapist and rehab technology expert, will join us to discuss practical takeaways.We’re excited to explore this topic with you!In order to earn credit for this course, you must take the test within the OT Potential Club.You can find more details on this course here:https://otpotential.com/ceu-podcast-courses/ehealth-participatory-medicine-otHere's the primary research we are discussing:Townsend, A., Leese, J., Adam, P., Mcdonald, M., Li, L. C., Kerr, S., & Backman, C. L. (2015). eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients’ and Health Care Providers’ Use of Health-Related Internet Information. Journal of Medical Internet Research, 17(6). doi: 10.2196/jmir.3792Support the show (https://otpotential.com/ot-potential-club)

When building a digital health company from the ground up, the road will, at times, arduous and challenging.  Entrepreneurs have to constantly examine their goals, their approaches, and - perhaps most importantly, their failures in order to stay on task and motivated. Not an easy task, but when you’re passionate about your solution, it’s a path you’re willing to take and a process you’re willing to submit to. In this episode, Eran Kabakov speaks candidly about his company’s nearly two-decade evolution, some mistakes he’s made along the way, and how the COVID-19 crisis helped open doors. Eran gives our listeners an honest look at the often unglamorous - but most often rewarding - rollercoaster ride of building a digital health company.    Here are the show highlights: How building something from nothing versus working in an existing, established infrastructure is like night and day (3:46) Product market fit and how it can evolve and change over time(7:34) Recognizing when you’ve reached product-market fit and how that can be different for every entrepreneur (13:44) How a crisis can reveal opportunities, even if doors closed in the past (17:01) Sometimes the market has to catch up to the entrepreneur’s vision (22:57) Why keeping your eye on your end goals can help you stay on track and inspired (28:42) Guest Bio Eran Kabakov is CEO and Founder of Docola, a digital health tool that enables providers to quickly share information with patients, tracks progress, assesses comprehension, and provides utilization reports, all on a HIPAA/GDPR compliant platform. Eran has been a clinician for over 30 years, has earned his BS in Physical Therapy from the University of Buffalo, and is a volunteer at the Aurora Project and the Society for Participatory Medicine. If you’d like to reach out to Eran, or are looking for additional information on Docola, you can find him on  LinkedIn at Eran Kabakov or visit their website at doco.la .

On PopHealth Week our guest is. We discuss a range of topics in the social determinants of health domain from implicit bias in healthcare decisions to empowerment and shared decision making. Kistein Monkhouse, MPA is the CEO & founder of Patient Orator, a digital health startup empowering chronically ill underserved patients with effective communication tools and healthcare resources. She is a former healthcare frontline worker who saw an urgent need to build bridges across communities in healthcare. Her work is at the intersection of public and private health using stories to bring awareness to the importance of improving the health of people and communities with a focus on catalyzing storytelling to address social determinants of health.   Kistein is a 2019 SIMA Studios fiscal sponsorship award recipient for her short film Humanizing Health Care, a narrative driven emotionally paced documentary about healthcare experiences in the United States. She sits on the advisory board of We The Patients NY, an initiative by the Community Service Society of NY, and NYS HIMSS Patient Advocacy Committee. She is also on the Community Advisory Board at Cambia Palliative Care Center of Excellence, University of Washington and a member of the Society for Participatory Medicine. ==##==  

Kristal Kent – Reclaim Your Life Even in Times of ChaosAired Friday, May 22, 2020 at 4:00 PM PST / 7:00 PM ESTPatient advocate Kristal Kent joins us to share how to reclaim the feeling of control over your life outcomes even in times of crisis and chaos. Often with a long-term medical condition, it's easy to feel as if you have lost control over your health, body, and life, including your rights. Regaining your sense of control by successfully advocating for yourself and others can give you back hope and self-esteem — two powerful factors in recovery. Kristal shares how to use patient advocacy skills in many areas of your life plus she shares:• The importance of self-advocacy and self-care, especially now,• Ways to build a community online and offline,• How to rewire your brain to focus on the positive regardless of what's going on around you• plus so much more…About our Guest:Kristal Kent is an Army Veteran, Fibromyalgia Advocate, Veteran Advocate, and Patient Leader Expert. With 20 years of Social Service experience, Kristal's advocacy work focuses on educating the Fibromyalgia Community on their illness, how to best advocate for their healthcare needs, and apply for Medical Disability Benefits. As a Veteran with Fibromyalgia, Kristal also advocates on behalf of Military Veterans diagnosed with PTSD, Traumatic Brain Injury, Chronic Pain Conditions, and Fibromyalgia. She works beside other Military Veterans and Veteran Organizations to bring about legislative changes at the VA. Her advocacy effort, for the Military Veteran Community and Fibromyalgia Community, has garnered several recognitions and awards. Kristal Kent is a member of “WEGO Health,” “Society for Participatory Medicine,” a Co-Op Member of the “Savvy Cooperation for Patients” and is a Board of Trustee Member for the “Fibromyalgia Care Society of America.” Kristal is the Founder of “The Fibromyalgia Pain Chronicles,” Founder of the “National Alliance of Fibromyalgia Advocates” and Co-Founder of “Veteran Voices For Fibromyalgia.”You can connect with Kristal and read about her Advocacy Initiatives on social media at https://www.facebook.com/FibroPainChronicles and https://www.facebook.com/VeteranVoicesForFibromyalgia/Listen to the empowering chat Friday, May 22 at 7 PM ET and later in podcast and videocast.The information provided on UnderstandingAutoimmune.com, Life InterruptedRadio.com, and The Autoimmune Hour is for educational purposes only.Visit the Autoimmune Hour show page https://omtimes.com/iom/shows/autoimmune-hour/Connect with Sharon Sayler at http://lifeinterruptedradio.com/#KristalKent #ReclaimLife #Health #TheAutoimmuneHour #SharonSayler

life outcomes even in times of crisis and chaos. Often with a long-term medical condition, it's easy to feel as if you have lost control over your health, body, and life, including your rights. Regaining your sense of control by successfully advocating for yourself and others can give you back hope and self-esteem — two powerful factors in recovery. Kristal shares how to use patient advocacy skills in many areas of your life plus she shares:• The importance of self-advocacy and self-care, especially now, • Ways to build a community online and offline, • How to rewire your brain to focus on the positive regardless of what's going on around youplus so much more...About our Guest: Kristal Kent is an Army Veteran, Fibromyalgia Advocate, Veteran Advocate, and Patient Leader Expert. With 20 years of Social Service experience, Kristal's advocacy work focuses on educating the Fibromyalgia Community on their illness, how to best advocate for their healthcare needs, and apply for Medical Disability Benefits. As a Veteran with Fibromyalgia, Kristal also advocates on behalf of Military Veterans diagnosed with PTSD, Traumatic Brain Injury, Chronic Pain Conditions, and Fibromyalgia. She works beside other Military Veterans and Veteran Organizations to bring about legislative changes at the VA. Her advocacy effort, for the Military Veteran Community and Fibromyalgia Community, has garnered several recognitions and awards. Kristal Kent is a member of “WEGO Health,” “Society for Participatory Medicine,” a Co-Op Member of the “Savvy Cooperation for Patients” and is a Board of Trustee Member for the “Fibromyalgia Care Society of America.” Kristal is the Founder of “The Fibromyalgia Pain Chronicles,” Founder of the “National Alliance of Fibromyalgia Advocates” and Co-Founder of “Veteran Voices For Fibromyalgia.” You can connect with Kristal and read about her Advocacy Initiatives on social media at https://www.facebook.com/FibroPainChronicles and https://www.facebook.com/VeteranVoicesForFibromyalgia/Listen to the empowering chat Friday, May 22 at 7 PM ET and later in podcast and videocast at www.UnderstandingAutoimmune.com/Advocate.The information provided on UnderstandingAutoimmune.com, Life InterruptedRadio.com, and The Autoimmune Hour is for educational purposes only.

On PopHealth Week our guest is Kistein Monkhouse MPA. We discuss a range of topics in the social determinants of health domain from implicit bias in healthcare decisions to empowerment and shared decision making. Kistein Monkhouse, MPA is the CEO & founder of Patient Orator, a digital health startup empowering chronically ill underserved patients with effective communication tools and healthcare resources. She is a former healthcare frontline worker who saw an urgent need to build bridges across communities in healthcare. Her work is at the intersection of public and private health using stories to bring awareness to the importance of improving the health of people and communities with a focus on catalyzing storytelling to address social determinants of health.   Kistein is a 2019 SIMA Studios fiscal sponsorship award recipient for her short film Humanizing Health Care, a narrative driven emotionally paced documentary about healthcare experiences in the United States. She sits on the advisory board of We The Patients NY, an initiative by the Community Service Society of NY, and NYS HIMSS Patient Advocacy Committee. She is also on the Community Advisory Board at Cambia Palliative Care Center of Excellence, University of Washington and a member of the Society for Participatory Medicine. Join us! ==##==  

We OTs are navigating an ever-changing maze of legislation, reimbursement, and care-delivery models.But, this week’s article calls us to focus on our profession’s most important relationship of all: our relationship with our clients.Get ready to really ponder the nature of our partnerships with clients...and to consider these relationships in terms like trust and vulnerability.The researchers held focus groups that examined how patient/provider relationships are changing due to both parties' reliance on the internet for answers. The results are fascinating. To discuss this topic, please join the OT Potential Club! Townsend, A., Leese, J., Adam, P., Mcdonald, M., Li, L. C., Kerr, S., & Backman, C. L. (2015). eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients’ and Health Care Providers’ Use of Health-Related Internet Information. Journal of Medical Internet Research, 17(6). doi: 10.2196/jmir.3792Support the show (https://otpotential.com/ot-potential-club)

My compatriot, Geri Lynn Baumblatt, consults and advocates on the overlapping worlds of employees, family caregivers, employers, and support, especially in nursing. In short, bread winners also caring for family and friends with acute and chronic illnesses and disabilities. I picture these overlapping worlds as balloons mashing up against each other trying not to burst. If you're a nurse, an employer, a boss, or a caregiving staff member, this chat about the Difference Collaborative is for you. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Geri Lynn Baumblatt 00:55. 1 Caregiving, working, and social isolation 07:14. 2 Manager creates a culture. Not enough. 11:38. 3 Compassion fatigue 15:51. 4 Is anybody good at this? 16:59. 4 Recognizing success 23:11. 5 Flexibility, loyalty, retention 27:03. 6 To reveal or not to reveal 31:17. 7 Honor the caregivers. Help the helpers. 34:49. 8 Policy 37:20. 9 Reflections 40:01. 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer Sponsored by Abridge Thanks to these fine people who inspired me for this episode: George Karavattuveeti, Carol Zindler, Olga Masevich, Pete Wendel, Alan Arriaga, Denise Brown, Mary Anne Sterling, Susan Murphy, Amber Soucy, MarlaJanWexler, Jeffrey Adams Geri Lynn Baumblatt, MA Geri grew up working in her dad's primary care practice. After her own experience with the healthcare system during grad school, she decided to help patients, families and clinicians connect, communicate, and navigate the habitrail that is the U.S. Health System. In 2003, she joined the founders of Emmi Solutions  to design multimedia programs to educate patients and families, set expectations, equip them to ask important questions, augment informed consent, improve outcomes, and create a new channel for patient-clinician communication. Over the next 15 years, Geri designed a range resources to help people participate in shared decision making, care transitions, live with chronic conditions, and care for loved ones. As an independent consultant she creates and tests resources for patients and families, helps organizations incorporate the patient and family voice into the development process, and design engagement and outcomes studies. She recently co-founded the Difference Collaborative to help employers ensure working family caregivers maintain their health, employment, wellbeing, and sanity — and to create a culture of care so they can work, care, and thrive. They partner on research and bring together employers, employees, researchers, product/service providers, and advocacy groups to address this in the workplace. They recently conducted research on nurses who are family caregivers and hosted a summit on the topic . She serves on the Board of the Society for Participatory Medicine and advises for Roobrik, Medorion, and Helpsy Health. Principal, Articulations Consulting Cofounder, Difference Collaborative @DiffCollab Board Member, Society for Participatory Medicine gerilynn@mac.com | @GeriLynn | 773-550-8905 Links Please take/share our 10-minute anonymous survey for nurse managers & leaders & hospital/health org ...

My compatriot, Geri Lynn Baumblatt, consults and advocates on the overlapping worlds of employees, family caregivers, employers, and support, especially in nursing. In short, bread winners also caring for family and friends with acute and chronic illnesses and disabilities. I picture these overlapping worlds as balloons mashing up against each other trying not to burst. If you’re a nurse, an employer, a boss, or a caregiving staff member, this chat about the Difference Collaborative is for you. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Geri Lynn Baumblatt 00:55. 1 Caregiving, working, and social isolation 07:14. 2 Manager creates a culture. Not enough. 11:38. 3 Compassion fatigue 15:51. 4 Is anybody good at this? 16:59. 4 Recognizing success 23:11. 5 Flexibility, loyalty, retention 27:03. 6 To reveal or not to reveal 31:17. 7 Honor the caregivers. Help the helpers. 34:49. 8 Policy 37:20. 9 Reflections 40:01. 9 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer Sponsored by Abridge Thanks to these fine people who inspired me for this episode: George Karavattuveeti, Carol Zindler, Olga Masevich, Pete Wendel, Alan Arriaga, Denise Brown, Mary Anne Sterling, Susan Murphy, Amber Soucy, MarlaJanWexler, Jeffrey Adams Geri Lynn Baumblatt, MA Geri grew up working in her dad's primary care practice. After her own experience with the healthcare system during grad school, she decided to help patients, families and clinicians connect, communicate, and navigate the habitrail that is the U.S. Health System. In 2003, she joined the founders of Emmi Solutions  to design multimedia programs to educate patients and families, set expectations, equip them to ask important questions, augment informed consent, improve outcomes, and create a new channel for patient-clinician communication. Over the next 15 years, Geri designed a range resources to help people participate in shared decision making, care transitions, live with chronic conditions, and care for loved ones. As an independent consultant she creates and tests resources for patients and families, helps organizations incorporate the patient and family voice into the development process, and design engagement and outcomes studies. She recently co-founded the Difference Collaborative to help employers ensure working family caregivers maintain their health, employment, wellbeing, and sanity — and to create a culture of care so they can work, care, and thrive. They partner on research and bring together employers, employees, researchers, product/service providers, and advocacy groups to address this in the workplace. They recently conducted research on nurses who are family caregivers and hosted a summit on the topic . She serves on the Board of the Society for Participatory Medicine and advises for Roobrik, Medorion, and Helpsy Health. Principal, Articulations Consulting Cofounder, Difference Collaborative @DiffCollab Board Member, Society for Participatory Medicine gerilynn@mac.com | @GeriLynn | 773-550-8905 Links Please take/share our 10-minute anonymous survey for nurse managers & leaders & hospital/health org ...

The holidays emphasize social connection and magic. Sometimes it feels like if we’re not feeling those things there’s something wrong with us; or it makes us sad and frustrated that we can’t find the magic. We watch all the movies, listen to all the music, put up the lights, and the tree and it’s still not there.    And it feels like everyone around us is dressed in matching Christmas pajama sets, making snow angels, gingerbread houses, having snowball fights, and curling up with their loved ones watching Christmas movies.    It can be a really hard time of year, but it can also be really great at the same time.   I know I’m not alone in struggling with these conflicting emotions at the holidays and well...throughout the year, so I hope you enjoy today’s conversation with behavior and technology expert Dr. John Grohol.    He is the founder, editor in chief and CEO of psych central, co-author of Self-Help That Works, a published researcher, sits on the scientific board of the journal, Computers in Human Behavior, and is a founding board member of the Society for Participatory Medicine.    He is truly the OG blogger...since 1995, he has overseen PsychCentral.com, the world’s leading mental health site overseen by mental health professionals offering information, resources, and over 250 support groups to over 6 million people each month. In 2008, it was named one of TIME.com’s 50 Best websites and in 2018, Psych Central reached its 500 millionth visitor.   I discovered John’s work after seeing an article on loneliness.    The most poignant part of this conversation for me in thinking about coping with holiday emotions was understanding my triggers - knowing what makes me feel sad, anxious, or angry and find ways to mitigate those situations appropriately.    During our conversation, we talk about:    How to check-in with yourself to recognize the things that make you happy and the things that might be bringing you down and how to make change. How his drive for helping people and the discovery that being a psychotherapist wasn’t for him led to the largest first online space for people to talk openly about mental health  The power of online community in reducing the stigma and loneliness that comes with mental health  Why connection is the antidote to loneliness  Why effective communication is one of the most powerful and important things we can learn  Why devices might not be as evil as we think Tactical ways to deal with loneliness and difficult emotions at the holidays    I also share with John my tendency to hang on to the past and create expectations of feeling the childhood magic and that impacts my joy today.    Website: www.psychcentral.com Twitter: www.twitter.com/docjohng

“Patient engagement is a subset of participatory medicine. Participatory medicine is about partnership between the patient and the clinical or scientific expert,” explains “ePatient Dave” deBronkart. “The whole purpose, the context, for this entire initiative is not to have physicians feel threatened, but to help healthcare achieve its potential with the patient contributing what they're able to.” Author of Let Patients Help: A Patient Engagement Handbook, Dave is a cancer survivor, patient advocate, and activist working to revolutionize the relationship between patients and healthcare providers.

Wednesday, June 13th 2018 our special guest is Bruno Nardone, Senior Vice President, Solutions - Population Health, NextGen Healthcare. Bruno Nardone joined NextGen Healthcare in October, 2016, to align the company’s connected health, analytics, and care coordination offerings for population health. His career in healthcare and hospital administration spans more than 25 years in executive leadership and strategy consulting at leading HIT solutions companies. Bruno leads solution strategy development for application programming interfaces (APIs); NextGen Healthcare Mirth® portfolio, NextGen® Share, and Rosetta interoperability solutions; NextGen Care®; NextGen® Health Quality Measures (NextGen HQM); and the NextGen® Population Health Management suite. During his career, Bruno has worked across industry stakeholder groups, leading high-performance teams focused on improving quality, efficiency, and connectivity in healthcare. He is an active Fellow of the American College of Healthcare Executives, and serves on the boards of the New England Chapter of Health Information Management Systems Society (HIMSS) and The Society for Participatory Medicine. He earned a BA degree from Cornell University and an MA degree in health administration from The George Washington University.  

On this episode, we welcome back two long-time friends of the show to talk privacy, security and HIPAA. David Harlow and Niam Yaraghi join me and Shahid for a wide-ranging discussion that includes: Niam's recent report: How HIPAA omnibus rules effectively reduced the number of data breaches among health care providers' business associates Europe's General Data Protection Regulation (GDPR) and how it applies to the U.S. healthcare system. The difference between a systems approach and a data approach to security and privacy How privacy might be seen as a facet of patient safety and how that could change the approach Breaking down myths about the value of stolen health data (and some ways it can be valuable to organized crime) Dealing with privacy when the business model is to share (i.e. the Facebook scandal) How can we expect privacy when we are the product? What can we / should we expect from companies like Facebook when it comes to privacy? What is the privacy paradox? Will more regulations help or hurt privacy? What's the FTC's role in all of this? Plus the LabMD saga. What's a digital health startup to do? All 4 panelists give advice to startups on how to deal with security and privacy. Hint: bake it in from scratch. It's not as hard, or expensive as you think.   About David Harlow DAVID HARLOW is Principal of The Harlow Group LLC, a health care law and consulting firm based in the Hub of the Universe, Boston, MA. His thirty years' experience in the public and private sectors affords him a unique perspective on legal, policy and business issues facing the health care community. David is adept at assisting clients in developing new paradigms for their business organizations, relationships and processes so as to maximize the realization of organizational goals in a highly regulated environment, in realms ranging from health data privacy and security to digital health strategy to physician-hospital relationships to facilities development to the avoidance of fraud and abuse. He's been called "an expert on HIPAA and other health-related law issues [who] knows more than virtually anyone on those topics.” (Forbes.com.) His award-winning blog, HealthBlawg, is highly regarded in both the legal and health policy blogging worlds. David is a charter member of the external Advisory Board of the Mayo Clinic Social Media Network and has served as the Public Policy Chair of the Society for Participatory Medicine, on the Health Law Section Council of the Massachusetts Bar Association and on the Advisory Board of FierceHealthIT. He speaks regularly before health care and legal industry groups on business, policy and legal matters. You should follow him on Twitter. http://davidharlow.me http://healthblawg.com @healthblawg   About Niam Yaraghi Niam Yaraghi s an assistant professor of Operations and Information Management at the University of Connecticut's School of Business and a non-resident fellow in the Brookings Institution's Center for Technology Innovation. His research is focused on the economics of health information technologies. In particular, Niam studies the business models and policy structures that incentivize transparency, interoperability and sharing of health information among patients, providers, payers and regulators. He empirically examines the subsequent impact of such efforts on cost and quality of care. Niam's ongoing research topics include health information exchange platforms, patient privacy, and healthcare evaluation and rating systems. He has a B.Sc in Industrial Engineering from the Isfahan University of Technology in Iran, and a M.Sc from the Royal Institute of Technology in Sweden. He received his Ph.D. in Management Science & Systems from the State University of New York at Buffalo. Niamyaraghi.com @niamyaraghi Niam's call to action for the listener: The state of privacy in healthcare is bad, but not as bad as you think! Federal privacy protection rules have helped with protecting privacy of many patients, yet the costs of implementing and complying with such rules are still unclear. We should realize that given the digitization of our lives, the borders around our private information are slowly fading away, and our individual responsibility and awareness about what we share with whom is our best bet in protecting our privacy. ~Niam Yaraghi Related Why You Should Always Be Preparing to Sell Your Company (i.e. build a company that's worth owning) | Dexter Braff | The Braff Group - Dexter's take on how to build a valuable company is very relevant to today's discussion. As Niam said: look at security and privacy as a builder of trust. It's a business value, not a business expense. Sharing Consumer Health Information: Look Before You Leap - This is David's post on the FTC complaint investigation that effectively put LabMD out of business. It's an ongoing story with all kinds of lessons for digital health companies dealing with consumer data. Grindr breach reveals inadequacy of digital age privacy regulations - Niam breaks down the recent Grindr breach. This is an interesting use case too because it's a breach born in good intentions for the users. Good intentions do not shield you from privacy obligations and rules. A New Story for Healthcare Security and Compliance w/ Niam Yaraghi - and #HCBiz video interview Can CPC+ align Physicians, Payers and HealthIT? w/ David Harlow - and #HCBiz video interview Trumpcare: Innovation, Speculation and What's Next w/ Niam Yaraghi - and #HCBiz video interview   Subscribe to Weekly Updates If you like what we're doing here, then please consider signing up for our weekly newsletter. You'll get one email from me each week detailing: New podcast episodes and blog posts. Content or ideas that I've found valuable in the past week. Insider info about the show like stats, upcoming episodes and future plans that I won't put anywhere else. Plain text and straight from the heart :) No SPAM or fancy graphics and you can unsubscribe with a single click anytime.   The #HCBiz Show! is produced by Glide Health IT, LLC in partnership with Netspective Media. Music by StudioEtar

Why do so many people feel a disconnect between themselves and their physicians? And what can be done about it? Participatory medicine shows just how connected a doctor and patient should be, and the kind of great results that can come of it. Hosted by Gabe Howard (www.gabehoward.com) and Vincent M. Wales (www.vincentmwales.com). Previous episodes can be found at psychcentral.com/show or on your favorite podcast player.

Host: Alicia A. Sutton Guest: Dave deBronkart From the annual meeting of the Alliance for Continuing Education in the Healthcare Professions in Orlando, Florida, keynote speaker Dave deBronkart joins host Alicia Sutton to discuss the evolving roles in the patient and doctor relationship. Better known as ‘e-Patient Dave’, deBronkart emphasizes key points in the shift from the patient as a passive recipient of care to one where the patient is an active contributor to his or her own care. deBronkart discusses healthy patient:doctor communication and ways clinicians can employ effective techniques. As a co-founder of the Society for Participatory Medicine and stage 4 kidney cancer survivor, deBronkart speaks globally on how patients should be partners in their care, rather than passive recipients, and how collaboration makes healthcare better for everyone.

Danny Sands, MD, practicing physician at Beth Israel Deaconess Medical Center and co-founder of the Society of Participatory Medicine, didn't always know he wanted to be a doctor and he went to college torn between medicine, law, or engineering. Although he went through to medical school, he has retained his interest in law and engineering, which has proven useful as the industry went through changes in regulation and technology.

We are all patients, but only one has come to be recognized as the face and voice for a growing community of activists encouraging the rise of participatory medicine. My guest today is a cancer survivor and patient advocate, Dave deBronkart, better known as e-Patient Dave. The evolving field of health & medicine has many challenges, but having patients pro-actively participate in their medical decision-making shouldn’t be one of them. As an industry that has historically relied on the one-sided expertise of physicians, technology and the internet have fundamentally changed the game. Patients have much greater access to information than ever before. So why then is it still so difficult to get patients to take charge of their health?  As it turns out, e-Patient Dave believes there is a science to patient engagement and behavior change that is not too different from how we describe the mechanism of action of a drug. On this episode, Dave shares what this means, what he has learned in his own personal journey on battling the ugly “C” word, what he believes is the fundamental difference between a patient and consumer, and what we need to do going forward so that patients play a more central and active role in their care. I found this conversation to be both inspirational and informative as I hope you will too. e-Patient Dave is an inspiring human being who believes the voice of the patient needs to be heard around the world. All this and more on today’s episode. Now, That’s Unusual. About “e-Patient” Dave deBronkart Dave deBronkart, better known as e-Patient Dave, was diagnosed with Stage IV kidney cancer in January of 2007. The best information gave him just 24 weeks to live, and with tumors in both lungs, several bones and muscle tissue, the prognosis was grim. Lucky enough to be connected with an academic medical center, Boston’s Beth Israel Deaconess, he received superior care that leveraged the best available research. Once it was clear that he had beaten the disease, deBronkart became an activist, seeking to open the healthcare information system directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient. Dave is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. He is today the best-known spokesman for the patient engagement movement, attending over 500 conferences and policy meetings in fifteen countries, including testifying in Washington for patient access to the medical record under Meaningful Use. A co-founder and chair emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Society for General Internal Medicine Forum, iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he’s appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice. Key Interview Takeaways The ‘e’ in e-patient stands for more than just ‘electronic.’ An e-patient is equipped, engaged, empowered and enabled to ask, “How can I help?” When considering scientific literature, ask yourself, “Was this study done well?” e-Patient Dave has a great respect for the literature, but he understands that it can be unreliable. Doctors are not trained how to examine and validate clinical studies, thus patients aren’t always receiving care based on the latest information. Though we crave certainty, we live in uncertainty. Our body has just twelve ways to express a problem,

This is the second year in a row, Health Innovation Media put a studio on the ground at HIMSS courtesy of the co-founders at Conversa Health, i.e., Phil Marshall, MD, MBA and West Shell III. We again built an impressive list of guests this year engaging with industry thought leaders, innovators, system executives and the former Acting Administrator for CMS Andy Slavitt. For the compete list checkout:  'LIVE From #HIMSS17: On This Week in Health Innovation'  and for last year's line-up including links to both audio and select video interviews, see: 'LIVE from #HIMSS16: Broadcast Schedule'. In this exchange Health Innovation Media co-host Douglas Goldstein engages Danny Sands, MD, Chief Medical Officer, Conversa Health and co-founder of the Society for Participatory Medicine. Produced by Gregg A. Masters, MPH for Health Innovation Media. Enjoy!

As the chief evangelist and co-founder of Aloha Health, Mandi Bishop is disrupting healthcare by making life actionable, helping healthcare systems make sense of the way invisible influences should shape personalized care plans, interventions, and engagements. She believes that patients must be partners in healthcare design and that there is no value-based care without recognizable value delivered to the very people healthcare exists to serve. Prior to Aloha, Mandi led Dell Healthcare and Life Science's Global Analytics Innovation and Consulting practice, driving solutions that touched the lives of over 100 million patients. In 2016, she was recognized as one of the "Most Powerful Women in Healthcare IT" by Health Data Management magazine. She was #1 on the crowdsourced #HIT100 list of top healthcare IT industry influencers, and #3 on Healthagen’s “Top 10 Healthcare Leaders to Follow on Twitter”. In 2015, she was included in Rock Health's "State of Women in Healthcare" report as a "Role Model". She is @MandiBPro on Twitter, co-chair for nationwide HealthIMPACT Forum events, an advisory board member for the Society for Participatory Medicine and #STEMPrincess, a contributor to the American Journal of Accountable Care and Tincture, and co-host of the Managed Care podcast series. - Social media handles: @MandiBPro (Twitter and Instagram) @Aloha_Health (Twitter) @Aloha.Health (Instagram) LinkedIn LinkedIn company page Facebook page - Links we discussed: Aloha Health website Humana's Bold Goal program Health Data Management

The annual 'fall classic' aka the Health 2.0 Fall Conference convened at the Santa Clara Convention Center for it's 10th Annual gathering from September 25th - 28th, 2016. In this session Jessica DeMasa debriefs withDanny Sands, MD, Chief Medical Officer, Conversa Health, and cofounder, Society for Participatory Medicine at the GE Healthcare, StartUp Health reception. Segment filmed and produced for Health Innovation Media by Gregg Masters, MPH. Enjoy! 

Jan Oldenburg, FHIMSS, is passionate about using digital tools to build a healthcare system where patients and caregivers participate as partners. She currently advises and mentors startups and consults with organizations who want to understand the evolving digital health landscape as the Principal in Participatory Health Consulting. Ms. Oldenburg has broad experience within all aspects of the healthcare ecosystem, including payers, providers, and integrated delivery systems. Most recently she was a Senior Manager in EY's Health Advisory Practice. Prior to joining EY, Ms. Oldenburg was the Vice President of Patient and Physician Engagement in Aetna's Accountable Care Solutions organization, where she worked with provider organizations to build collaborative ACO solutions. She also spent seven years as a manager and senior manager in Kaiser Permanente's Digital Services Group, directing strategy and implementation for web and mobile products including clinical, payment, and administrative capabilities. Ms. Oldenburg has been a principal in several consulting companies focused on using the digital capabilities effectively in healthcare to engage consumers. She is the primary editor of Engage! Transforming Healthcare Through Digital Patient Engagement, published by HIMSS press and winner of “Best Book of 2013” honors at HIMSS 2014, as well as the principal Editor of Participatory Healthcare: A Person-Centered Approach to Transforming Healthcare to be published by CRC Press in June, 2016. She also is the author of the “Personal Health Engagement” chapter in the Third Edition of Medical Informatics, published in March, 2015 and the “Participatory Medicine” chapter of The Journey Never Ends, published in March, 2016, as well as a number of articles and blog posts. Ms. Oldenburg is the co-chair of the HIMSS Connected Health Committee and a frequent speaker and commentator on patient and physician engagement issues; she tweets @janoldenburg. 00:00 Jan talks about ‘Patient Engagement,' and why she's not a fan of the term. 03:00 Looking at an individual outside of the context of being a patient. 04:15 Shifting the healthcare mindset. 05:20 Shifting away from the hierarchies in medicine. 06:30 Looking at attitudes and values that organizations hold. 07:40 Education, Active Patients, Market Forces, Leadership, Rewards & Values, Digital Tools. 08:25 The three characteristics Digital Tools need: Connection, Convenience, Life Value. 10:45 Changing the attitudes about patients interacting with internet resources. 11:45 “Part of the role of being a Doctor is Coach.” 12:45 Participatory Healthcare, Jan's second book. 14:20 How to use Digital Tools to assist Physicians. 15:00 The importance at examining how we design tools. 17:15 “Have we really looked as carefully as we need to?” 20:00 “There's huge promise in the capabilities of technology and we're not using them to their full extent.” 25:50 “How can we design Clinics and Health Systems so it's about the convenience of patients.” 29:00 You can learn more at janoldenburg.com or on Twitter: @janoldenburg, and the Society for Participatory Medicine at participatorymedicine.org.

Participants in our discussion on person centred care in January agreed that a change in culture and better use of technology could benefit both patients and doctors. At the roundtable: Fiona Godlee (chair), editor in chief, The BMJ Tessa Richards, senior editor, patient partnership, The BMJ Rosamund Snow, patient editor, The BMJ Navjoyt Ladher, clinical editor, The BMJ Angela Coulter, director of global initiatives, Informed Medical Decisions Foundation (www.informedmedicaldecisions.org) Paul Wicks, vice president of innovation, PatientsLikeMe (www.patientslikeme.com) Michael Seres, founder, 11 Health (www.11health.com) Alf Collins, clinical associate in person centred care, Health Foundation (www.health.org.uk) Jeremy Taylor, chief executive, National Voices (www.nationalvoices.org.uk) Dave deBronkart, cochair, Society for Participatory Medicine (www.participatorymedicine.org) Amir Hannan, general practitioner and member of clinical commissioning group board Alexander Silverstein, past president, International Diabetes Federation's young leaders in diabetes project Paul Hodgkin, founder, Patient Opinion (www.patientopinion.org.uk) Ben Mearns, consultant in acute care and elderly medicine, Surrey and Sussex Healthcare NHS Trust Sara Riggare, PhD student in health informatics, Karolinska Institute Rupert Whitaker, founder, Tuke Institute (www.tukeinstitute.org) Stephen Leyshon (observer), DNV Healthcare

On the Wednesday, April 9th broadcast at 10AM PT/1PM ET our special guest is Danny Sands, MD, Health IT Consultant at Zev Enterprises and Co-Chairman, Co-Founder, and Past-President at Society for Participatory Medicine. 'Danny Sands is passionate about healthcare transformation, non-visit based care, collaboration in healthcare, and participatory medicine. He spent six years at Cisco, most recently as chief medical informatics officer, where he provided both internal and external health IT leadership and helped key customers with business and clinical transformation using IT. Danny's prior position was chief medical officer for Zix Corporation, a leader in secure e-mail and e-prescribing, and before that he spent 13 years at Beth Israel Deaconess Medical Center in Boston, where he developed and implemented numerous systems to improve clinical care delivery and patient engagement. He has earned degrees from Brown University, Ohio State University, Harvard School of Public Health, and trained at Boston City Hospital and Boston's Beth Israel Hospital. Dr. Sands currently holds an academic appointment at Harvard Medical School and maintains a primary care practice in which he makes extensive use of health IT (much of which he helped to introduce during his tenure at Beth Israel Deaconess). Sands is the recipient of numerous health IT awards, has been elected to fellowship in both the American College of Physicians and the American College of Medical Informatics, and is a founder and co-chair of the board of the Society for Participatory Medicine.' Dr Sands co-authored 'Let Patients Help' with ePatient Dave. Join is for an informative session.

On the continuation of the nimble yet mobile 'Health 2.0 Silicon Valley Countdown series' on Thursday September 26th 2013 at 12PM Pacific and 3PM Eastern our special guests are @RohitBhargava, author of @likeonomics and Fard Johnmar, founder of Enspektos. Join Dr Pat Salber @docweighsin and me @2healthguru to meet these two innovators and learn what's behind the genesis of the to be released book 'ePatient 2015; 15 Digital Health Trends That Define The Connected Patient of the Future'. As well as whats on their radar for the upcoming 'fall classic'. For an overview of Health 2.0 Silicon Valley 2013 by no other than @boltyboy himself, check out 'the health 2.0 countdown with Matt Holt'. Also on the record to date: a chat with Akhila Satish, CEO of @MyCyberDoctor, and Scott Brown President of @MyDirectives. Join us!

Many of us turn to Google at the first sign of sickness, and over the past few years, more and more doctors have started to meet us there. Boutique practices promise easy e-mail correspondence with doctors — along with unlimited in-person access — for a flat fee of a few grand. Kaiser guarantees 24-hour response times for any inquiries made to doctors online. And countless websites, from WebMD to ailment-specific chat rooms, offer easy medical advice, sometimes over webcams. But for all the ease of access — and the improved care it could bring to rural or poor patients — most doctors don’t get paid for online consultations, and medical advice sites aren’t clearly regulated. What are the opportunities and dangers of online care? Zócalo invited a panel including Health 2.0 co-founder Indu Subaiya, co-chair of the Society for Participatory Medicine and e-Patients.net blogger Dave de Bronkart, One Medical Group Founder and CEO Thomas Lee, and MedSimple founder Francis Kong to consider how the Internet is changing the way we care for ourselves. This event was made possible by a generous grant from the California HealthCare Foundation.